Are all metal-on-metal hip revision operations contributing to the National Joint Registry implant survival curves? : a study comparing the London Implant Retrieval Centre and National Joint Registry datasets.

PubMed

Sabah, S A; Henckel, J; Koutsouris, S; Rajani, R; Hothi, H; Skinner, J A; Hart, A J

2016-01-01

The National Joint Registry for England, Wales and Northern Ireland (NJR) has extended its scope to report on hospital, surgeon and implant performance. Data linkage of the NJR to the London Implant Retrieval Centre (LIRC) has previously evaluated data quality for hip primary procedures, but did not assess revision records. We analysed metal-on-metal hip revision procedures performed between 2003 and 2013. A total of 69 929 revision procedures from the NJR and 929 revised pairs of components from the LIRC were included. We were able to link 716 (77.1%) revision procedures on the NJR to the LIRC. This meant that 213 (22.9%) revision procedures at the LIRC could not be identified on the NJR. We found that 349 (37.6%) explants at the LIRC completed the full linkage process to both NJR primary and revision databases. Data completion was excellent (> 99.9%) for revision procedures reported to the NJR. This study has shown that only approximately one third of retrieved components at the LIRC, contributed to survival curves on the NJR. We recommend prospective registry-retrieval linkage as a tool to feedback missing and erroneous data to the NJR and improve data quality. Prospective Registry - retrieval linkage is a simple tool to evaluate and improve data quality on the NJR. ©2016 Sabah et al.

Improving outcomes for hospital patients with critical bleeding requiring massive transfusion: the Australian and New Zealand Massive Transfusion Registry study methodology.

PubMed

Oldroyd, J C; Venardos, K M; Aoki, N J; Zatta, A J; McQuilten, Z K; Phillips, L E; Andrianopoulos, N; Cooper, D J; Cameron, P A; Isbister, J P; Wood, E M

2016-10-06

The Australian and New Zealand (ANZ) Massive Transfusion (MT) Registry (MTR) has been established to improve the quality of care of patients with critical bleeding (CB) requiring MT (≥ 5 units red blood cells (RBC) over 4 h). The MTR is providing data to: (1) improve the evidence base for transfusion practice by systematically collecting data on transfusion practice and clinical outcomes; (2) monitor variations in practice and provide an opportunity for benchmarking, and feedback on practice/blood product use; (3) inform blood supply planning, inventory management and development of future clinical trials; and (4) measure and enhance translation of evidence into policy and patient blood management guidelines. The MTR commenced in 2011. At each participating site, all eligible patients aged ≥18 years with CB from any clinical context receiving MT are included using a waived consent model. Patient information and clinical coding, transfusion history, and laboratory test results are extracted for each patient's hospital admission at the episode level. Thirty-two hospitals have enrolled and 3566 MT patients have been identified across Australia and New Zealand between 2011 and 2015. The majority of CB contexts are surgical, followed by trauma and gastrointestinal haemorrhage. Validation studies have verified that the definition of MT used in the registry correctly identifies 94 % of CB events, and that the median time of transfusion for the majority of fresh products is the 'product event issue time' from the hospital blood bank plus 20 min. Data linkage between the MTR and mortality databases in Australia and New Zealand will allow comparisons of risk-adjusted mortality estimates across different bleeding contexts, and between countries. Data extracts will be examined to determine if there are differences in patient outcomes according to transfusion practice. The ratios of blood components (e.g. FFP:RBC) used in different types of critical bleeding will also

Scald burns in children aged 14 and younger in Australia and New Zealand—an analysis based on the Burn Registry of Australia and New Zealand (BRANZ).

PubMed

Riedlinger, Dorothee I; Jennings, Paul A; Edgar, Dale W; Harvey, John G; Cleland, Ms Heather J; Wood, Fiona M; Cameron, Peter A

2015-05-01

Scalds are a common injury in children and a frequent reason for hospitalisation despite being a preventable injury. This retrospective two year study reports data from 730 children aged 14 years or younger who sustained a scald between 2009 and 2010 and were admitted to a burns centre in Australia or New Zealand. Data were extracted from the Burn Registry of Australia and New Zealand (BRANZ), which included data from 13 burns centres in Australia and New Zealand. Scald injury contributed 56% (95% CI 53-59%) of all pediatric burns. There were two high risk groups; male toddlers age one to two, contributing 34% (95% CI 31-38%) of all scalds, and indigenous children who were over 3 times more likely to experience a scald requiring admission to a burns unit than their non-indigenous peers. First aid cooling by non-professionals was initiated in 89% (95% CI 86-91%) of cases but only 20% (95% CI 16-23%) performed it as recommended. This study highlights that effective burn first aid reduces hospital stay and reinforces the need to encourage, carers and bystanders to deliver effective first aid and the importance of targeted prevention campaigns that reduce the burden of pediatric scald burns in Australia and New Zealand. Copyright © 2014 Elsevier Ltd and ISBI. All rights reserved.

The New ADL Registry. ADL Registry Web Portal Changes

DTIC Science & Technology

2009-08-19

Questions or Comments? Jason Haag Learning Technology Analyst jason.haag.ctr@adlnet.gov +1.850.471.1300 ...PERFORMING ORGANIZATION NAME(S) AND ADDRESS(ES) Advanced Decision Learning (ADL),Joint ADL Co-Lab,13501 Ingenuity Drive Suite 248,Orlando,FL,32826 8... Technologies /adlr/  News and Announcements  Frequently Asked Questions (FAQ)  Documentation  Events and Event Registration 4 ADL Registry Functional

An overview of New Zealand's trauma system.

PubMed

Paice, Rhondda

2007-01-01

Patterns of trauma and trauma systems in New Zealand are similar to those in Australia. Both countries have geographical considerations, terrain and distance, that can cause delay to definitive care. There are only 7 hospitals in New Zealand that currently manage major trauma patients, and consequently, trauma patients are often hospitalized some distance from their homes. The prehospital services are provided by one major provider throughout the country, with a high level of volunteers providing these services in the rural areas. New Zealand has a national no-fault accident insurance system, the Accident Compensation Corporation, which funds all trauma-related healthcare from the roadside to rehabilitation. This insurance system provides 24-hour no-fault personal injury insurance coverage. The Accident Compensation Corporation provides bulk funding to hospitals for resources to manage the care of trauma patients. Case managers are assigned for major trauma patients. This national system also has a rehabilitation focus. The actual funds are managed by the hospitals, and this allows hospital staff to provide optimum care for trauma patients. New Zealand works closely with Australia in the development of a national trauma registry, research, and education in trauma care for patients in Australasia (the islands of the southern Pacific Ocean, including Australia, New Zealand, and New Guinea).

Risk-Factor Profile of Living Kidney Donors: The Australia and New Zealand Dialysis and Transplant Living Kidney Donor Registry 2004-2012.

PubMed

Clayton, Philip A; Saunders, John R; McDonald, Stephen P; Allen, Richard D M; Pilmore, Helen; Saunder, Alan; Boudville, Neil; Chadban, Steven J

2016-06-01

Recent literature suggests that living kidney donation may be associated with an excess risk of end-stage kidney disease and death. Efforts to maximize access to transplantation may result in acceptance of donors who do not fit within current guidelines, potentially placing them at risk of adverse long-term outcomes. We studied the risk profile of Australian and New Zealand living kidney donors using data from the Australia and New Zealand Dialysis and Transplant Living Kidney Donor Registry over 2004 to 2012. We compared their predonation profile against national guidelines for donor acceptance. The analysis included 2,932 donors (mean age 48.8 ± 11.2 years, range 18-81), 58% female and 87% Caucasian. Forty (1%) had measured glomerular filtration rate less than 80 mL/min; 32 (1%) had proteinuria >300 mg/day; 589 (20%) were hypertensive; 495 (18%) obese; 9 (0.3%) were diabetic while a further 55 (2%) had impaired glucose tolerance; and 218 (7%) were current smokers. Overall 767 donors (26%) had at least one relative contraindication to donation and 268 (9%) had at least one absolute contraindication according to national guidelines. Divergence of current clinical practice from national guidelines has occurred. In the context of recent evidence demonstrating elevated long-term donor risk, rigorous follow-up and reporting of outcomes are now mandated to ensure safety and document any change in risk associated with such a divergence.

Arthroplasty Implant Registries Over the Past Five Decades: Development, Current, and Future Impact.

PubMed

Malchau, Henrik; Garellick, Göran; Berry, Daniel; Harris, William H; Robertson, Otto; Kärrlholm, Johan; Lewallen, David; Bragdon, Charles R; Lidgren, Lars; Herberts, Peter

2018-04-16

Local, regional and national registries have played an important role the development of hip and knee arthroplasty and the treatment of patients with various maladies of these joints. Four arthroplasty registries stand out as leading forces behind the drive to popularize the use of registries and pursue the concept of evidence based medicine. The Mayo registry, started by Mark Coventry, is recognized as the oldest continuing registry for arthroplasty. The Harris Registry at Massachusetts General Hospital, along with the Mayo Registry, has greatly contributed to the advancement of arthroplasty surgery and have served an important role of identifying poorly performing implants and techniques in the United States. The Swedish Knee Arthroplasty Registry is the oldest national registry dedicated to joint arthroplasty and along with the Swedish Hip Arthroplasty Registry have established the infrastructure, analysis and reporting mechanisms and leadership that has enabled other countries to subsequently develop national registries around the world. As more countries have adopted the concept of national registries, a new area of research is possible by pooling the resources of large registries as is now occurring with the Nordic countries. Several international organizations have been formed to promote future collaboration and develop international standards. The process of globalization of registries is a result of continued efforts over the past 50 years in improving and disseminating the knowledge gained from the early registries. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.

Characteristics of and differences between Pasifika women and New Zealand European women diagnosed with breast cancer in New Zealand.

PubMed

Brown, Charis; Lao, Chunhuan; Lawrenson, Ross; Tin Tin, Sandar; Schaaf, Michelle; Kidd, Jacquie; Allan-Moetaua, Anne; Herman, Josephine; Raamsroop, Reena; Campbell, Ian; Elwood, Mark

2017-12-15

Breast cancer in New Zealand-based Pasifika women is a significant issue. Although Pasifika women have a lower incidence of breast cancer compared to New Zealand European women, they have higher breast cancer mortality and lower five-year survival. The aim of this study was to describe the characteristics and tumour biology of Pasifika women and to compare New Zealand European women to identify what factors impact on early (Stage 1 and 2) vs advanced stage (Stage 3 and 4) at diagnosis. Data on all Pasifika and New Zealand European women diagnosed with breast cancer (C50) during the period 1 June 2000 to 31 May 2013 was extracted from the Auckland and Waikato Breast Cancer Registries. Descriptive tables and Chi-square test were used to examine differences in characteristics and tumour biology between Pasifika and New Zealand European women. Logistic regression was used to identify factors that contributed to an increased risk of advanced stage at diagnosis. A significantly higher proportion of Pasifika women had advanced disease at diagnosis compared to New Zealand European women (33.3% and 18.3%, respectively). Cancer biology in Pasifika women was more likely to be: 1) HER2+, 2) ER/PR negative and 3) have a tumour size of ≥50mm. Pasifika women live in higher deprivation areas of 9-10 compared to New Zealand European women (55% vs 14%, respectively) and were less likely to have their cancer identified through screening. Logistic regression showed that if Pasifika women were on the screen-detected pathway they had similar odds (not sig.) of having advanced disease at diagnosis to New Zealand European women. Mode of detection, deprivation, age and some biological factors contributed to the difference in odds ratio between Pasifika and New Zealand European women. For those of screening age, adherence to the screening programme and improvements in access to earlier diagnosis for Pasifika women under the current screening age have the potential to make a substantial

Outpatient presentations to burn centers: data from the Burns Registry of Australia and New Zealand outpatient pilot project.

PubMed

Gabbe, Belinda J; Watterson, Dina M; Singer, Yvonne; Darton, Anne

2015-05-01

Most studies about burn injury focus on admitted cases. To compare outpatient and inpatient presentations at burn centers in Australia to inform the establishment of a repository for outpatient burn injury. Data for sequential outpatient presentations were collected at seven burn centers in Australia between December 2010 and May 2011 and compared with inpatient admissions from these centers recorded by the Burns Registry of Australia and New Zealand for the corresponding period. There were 788 outpatient and 360 inpatient presentations. Pediatric outpatients included more children <3 years of age (64% vs 33%), scald (52% vs 35%) and contact burns (39% vs 24%). Adult outpatients included fewer males (58% vs 73%) and intentional injuries (3.3% vs 10%), and more scald (46% vs 30%) and contact burns (24% vs 13%). All pediatric, and 98% of adult, outpatient presentations involved a %TBSA<10. The pattern of outpatient presentations was consistent between centers. Outpatient presentations outnumbered inpatient admissions by 2.2:1. The pattern of outpatient burns presenting to burn centers differed to inpatient admission data, particularly with respect to etiology and burn severity, highlighting the importance of the need for outpatient data to enhance burn injury surveillance and inform prevention. Copyright © 2014 Elsevier Ltd and ISBI. All rights reserved.

Epidemiology of diabetes in New Zealand: revisit to a changing landscape.

PubMed

Joshy, Grace; Simmons, David

2006-06-02

The aim of this review is to describe the evolution of the burden of diabetes, its risk factors and complications in New Zealand, and the current national strategies underway to tackle a condition likely to impact on the national ability to afford other health services. The MEDLINE database from 1990 was searched for New Zealand-specific diabetes studies. The Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) Reports from 1990-2004 and Ministry of Health (MoH) publications and reports were also reviewed. Key contact people working in the field of diabetes care in every district health board (DHB) were contacted, and information on current initiatives for diabetes control and prevention were collected. The prevalence of diabetes (known and undiagnosed), impaired glucose tolerance (IGT)/impaired fasting glucose (IFG) and gestational diabetes are tabulated by ethnic group. The latest New Zealand Health Survey (NZHS) result of known diabetes: European 2.9%, Maori 8%, Pacific 10.1%, Asian 8.4%. Diabetes risk factors have been examined and the reported rates have been compiled. Maori and Pacific people have a particularly high prevalence of diabetes risk factors (e.g. obesity, physical inactivity, insulin resistance, metabolic syndrome) compared with Europeans. The profile of diabetic patients in New Zealand has been summarised using publications on their clinical characteristics. The latest available data on ethnic specific clinical characteristics are a decade old. With the suboptimal participation in the Get Checked program: 63% Europeans/Others, 27% Maori, 92% Pacific (possibly overestimated) people in 2004, the results may not be representative. The burden of diabetes complications and diabetes related mortality has been reviewed. A high proportion of Maori and Pacific dialysis patients and new renal disease patients from the ANZDATA registry have diabetes comorbidity. The inadequacy of official statistics in New Zealand and the scarcity of indepth

Do "premium" joint implants add value?: analysis of high cost joint implants in a community registry.

PubMed

Gioe, Terence J; Sharma, Amit; Tatman, Penny; Mehle, Susan

2011-01-01

Numerous joint implant options of varying cost are available to the surgeon, but it is unclear whether more costly implants add value in terms of function or longevity. We evaluated registry survival of higher-cost "premium" knee and hip components compared to lower-priced standard components. Premium TKA components were defined as mobile-bearing designs, high-flexion designs, oxidized-zirconium designs, those including moderately crosslinked polyethylene inserts, or some combination. Premium THAs included ceramic-on-ceramic, metal-on-metal, and ceramic-on-highly crosslinked polyethylene designs. We compared 3462 standard TKAs to 2806 premium TKAs and 868 standard THAs to 1311 premium THAs using standard statistical methods. The cost of the premium implants was on average approximately $1000 higher than the standard implants. There was no difference in the cumulative revision rate at 7-8 years between premium and standard TKAs or THAs. In this time frame, premium implants did not demonstrate better survival than standard implants. Revision indications for TKA did not differ, and infection and instability remained contributors. Longer followup is necessary to demonstrate whether premium implants add value in younger patient groups. Level III, therapeutic study. See Guidelines for Authors for a complete description of levels of evidence.

An Incident Cohort Study Comparing Survival on Home Hemodialysis and Peritoneal Dialysis (Australia and New Zealand Dialysis and Transplantation Registry)

PubMed Central

Nadeau-Fredette, Annie-Claire; Hawley, Carmel M.; Pascoe, Elaine M.; Chan, Christopher T.; Clayton, Philip A.; Polkinghorne, Kevan R.; Boudville, Neil; Leblanc, Martine

2015-01-01

Background and objectives Home dialysis is often recognized as a first-choice therapy for patients initiating dialysis. However, studies comparing clinical outcomes between peritoneal dialysis and home hemodialysis have been very limited. Design, setting, participants, & measurements This Australia and New Zealand Dialysis and Transplantation Registry study assessed all Australian and New Zealand adult patients receiving home dialysis on day 90 after initiation of RRT between 2000 and 2012. The primary outcome was overall survival. The secondary outcomes were on-treatment survival, patient and technique survival, and death-censored technique survival. All results were adjusted with three prespecified models: multivariable Cox proportional hazards model (main model), propensity score quintile–stratified model, and propensity score–matched model. Results The study included 10,710 patients on incident peritoneal dialysis and 706 patients on incident home hemodialysis. Treatment with home hemodialysis was associated with better patient survival than treatment with peritoneal dialysis (5-year survival: 85% versus 44%, respectively; log-rank P<0.001). Using multivariable Cox proportional hazards analysis, home hemodialysis was associated with superior patient survival (hazard ratio for overall death, 0.47; 95% confidence interval, 0.38 to 0.59) as well as better on-treatment survival (hazard ratio for on-treatment death, 0.34; 95% confidence interval, 0.26 to 0.45), composite patient and technique survival (hazard ratio for death or technique failure, 0.34; 95% confidence interval, 0.29 to 0.40), and death-censored technique survival (hazard ratio for technique failure, 0.34; 95% confidence interval, 0.28 to 0.41). Similar results were obtained with the propensity score models as well as sensitivity analyses using competing risks models and different definitions for technique failure and lag period after modality switch, during which events were attributed to the

Development of an International Prostate Cancer Outcomes Registry.

PubMed

Evans, Sue M; Nag, Nupur; Roder, David; Brooks, Andrew; Millar, Jeremy L; Moretti, Kim L; Pryor, David; Skala, Marketa; McNeil, John J

2016-04-01

To establish a Prostate Cancer Outcomes Registry-Australia and New Zealand (PCOR-ANZ) for monitoring outcomes of prostate cancer treatment and care, in a cost-effective manner. Stakeholders were recruited based on their interest, importance in achieving the monitoring and reporting of clinical practice and patient outcomes, and in amalgamation of existing registries. Each participating jurisdiction is responsible for local governance, site recruitment, data collection, and data transfer into the PCOR-ANZ. To establish each local registry, hospitals and clinicians within a jurisdiction were approached to voluntarily contribute to the registry following relevant ethical approval. Patient contact occurs following notification of prostate cancer through a hospital or pathology report, or from a cancer registry. Patient registration is based on an opt-out model. The PCOR-ANZ is a secure web-based registry adhering to ISO 27001 standards. Based on a standardised minimum data set, information on demographics, diagnosis, treatment, outcomes, and patient reported quality of life, are collected. Eight of nine jurisdictions have agreed to contribute to the PCOR-ANZ. Each jurisdiction has commenced implementation of necessary infrastructure to support rapid rollout. PCOR-ANZ has defined a minimum data set for collection, to enable analysis of key quality indicators that will aid in assessing clinical practice and patient focused outcomes. PCOR-ANZ will provide a useful resource of risk-adjusted evidence-based data to clinicians, hospitals, and decision makers on prostate cancer clinical practice. © 2016 The Authors BJU International © 2016 BJU International Published by John Wiley & Sons Ltd.

Joint registries as continuous surveillance systems: the experience of the Catalan Arthroplasty Register (RACat).

PubMed

Allepuz, Alejandro; Martínez, Olga; Tebé, Cristian; Nardi, Joan; Portabella, Frederic; Espallargues, Mireia

2014-03-01

The aim was to present results on prosthesis performance in Catalonia for the period 2005-2010. All publicly funded hospitals submit in an electronic format data on hip and knee arthroplasties: patients' insurance identification number, hospital, joint (hip/knee), type of arthroplasty (primary/revision), side (right/left), date of surgery and prosthesis (manufacturer name and catalogue number). A standard survival analysis based on Kaplan-Meier estimation was carried out. Fifty-two hospitals have sent information to the RACat which has data on 36,951 knee and 26,477 hip arthroplasties. Cumulative prostheses revision risks at 3 years were 3.3% (95% CI: 3.1-3.6) for knee, 2.9% (95% CI: 2.5-3.3) for total hip and 2.5% (95% CI: 2.0-3.1) for partial hip. When compared to other registries a higher risk of revision was observed. © 2013.

Utility of an Australasian registry for children undergoing radiation treatment.

PubMed

Ahern, Verity

2014-12-01

The aim of this study was to evaluate the utility of an Australasian registry ('the Registry') for children undergoing radiation treatment (RT). Children under the age of 16 years who received a course of radiation between January 1997 and December 2010 and were enrolled on the Registry form the subjects of this study. A total of 2232 courses of RT were delivered, predominantly with radical intent (87%). Registrations fluctuated over time, but around one-half of children diagnosed with cancer undergo a course of RT. The most prevalent age range at time of RT was 10-15 years, and the most common diagnoses were central nervous system tumours (34%) and acute lymphoblastic leukaemia (20%). The Registry provides a reflection of the patterns of care of children undergoing RT in Australia and a mechanism for determining the resources necessary to manage children by RT (human, facilities and emerging technologies, such as proton therapy). It lacks the detail to provide information on radiotherapy quality and disease outcomes which should be the subject of separate audit studies. The utility of the Registry has been hampered by its voluntary nature and varying needs for consent. Completion of registry forms is a logical requirement for inclusion in the definition of a subspecialist in paediatric radiation oncology. © 2014 The Royal Australian and New Zealand College of Radiologists.

Patient-reported outcome measures in arthroplasty registries

PubMed Central

Bohm, Eric; Franklin, Patricia; Lyman, Stephen; Denissen, Geke; Dawson, Jill; Dunn, Jennifer; Eresian Chenok, Kate; Dunbar, Michael; Overgaard, Søren; Garellick, Göran; Lübbeke, Anne

2016-01-01

Abstract — The International Society of Arthroplasty Registries (ISAR) Patient-Reported Outcome Measures (PROMs) Working Group have evaluated and recommended best practices in the selection, administration, and interpretation of PROMs for hip and knee arthroplasty registries. The 2 generic PROMs in common use are the Short Form health surveys (SF-36 or SF-12) and EuroQol 5-dimension (EQ-5D). The Working Group recommends that registries should choose specific PROMs that have been appropriately developed with good measurement properties for arthroplasty patients. The Working Group recommend the use of a 1-item pain question (“During the past 4 weeks, how would you describe the pain you usually have in your [right/left] [hip/knee]?”; response: none, very mild, mild, moderate, or severe) and a single-item satisfaction outcome (“How satisfied are you with your [right/left] [hip/knee] replacement?”; response: very unsatisfied, dissatisfied, neutral, satisfied, or very satisfied). Survey logistics include patient instructions, paper- and electronic-based data collection, reminders for follow-up, centralized as opposed to hospital-based follow-up, sample size, patient- or joint-specific evaluation, collection intervals, frequency of response, missing values, and factors in establishing a PROMs registry program. The Working Group recommends including age, sex, diagnosis at joint, general health status preoperatively, and joint pain and function score in case-mix adjustment models. Interpretation and statistical analysis should consider the absolute level of pain, function, and general health status as well as improvement, missing data, approaches to analysis and case-mix adjustment, minimal clinically important difference, and minimal detectable change. The Working Group recommends data collection immediately before and 1 year after surgery, a threshold of 60% for acceptable frequency of response, documentation of non-responders, and documentation of incomplete or

Haemopoietic stem cell transplantation for children in Australia and New Zealand, 1998-2006: a report on behalf of the Australasian Bone Marrow Transplant Recipient Registry and the Australian and New Zealand Children's Haematology Oncology Group.

PubMed

Moore, Andrew S; Shaw, Peter J; Hallahan, Andrew R; Carter, Tina L; Kilo, Tatjana; Nivison-Smith, Ian; O'Brien, Tracey A; Tapp, Heather; Teague, Lochie; Wilson, Shaun R; Tiedemann, Karin

2009-02-02

To document haemopoietic stem cell transplantation (HSCT) activity and trends among paediatric patients in Australia and New Zealand. A retrospective analysis of data reported to the Australasian Bone Marrow Transplant Recipient Registry by the seven paediatric HSCT institutions in Australia and New Zealand over the 9-year period 1998-2006, with particular focus on the most recent years (2002-2006). Types of HSCT performed; transplant-related mortality (TRM); stem cell sources; indications for HSCT; causes of death after HSCT. Over the period 1998-2006, 522 autologous HSCT procedures (41%) and 737 allogeneic procedures (59%) were performed. About 60% of allogeneic transplants involved alternative donors (donors other than a human leukocyte antigen-matched sibling). The use of umbilical cord blood as a source of haemopoietic stem cells has doubled since 1998, with 34% of allogeneic transplants in 2006 using cord blood. Over the period 2002-2006, the median age of patients receiving transplants was 7 years (range, 0-19 years). The most common indications for allogeneic HSCT were acute lymphoblastic leukaemia (33%) and acute myeloid leukaemia (24%). The most common indications for autologous HSCT were neuroblastoma (23%), medulloblastoma (21%) and Ewing sarcoma (10%). TRM at 1 year after transplant was 22% for alternative donor transplants, 7% for matched-sibling transplants and 5% for autologous transplants. Relapse or persistence of a child's underlying condition accounted for 54% of all deaths within 1 year after transplant. HSCT is an important procedure for children with a range of life-threatening illnesses. Local trends in the indications for HSCT, donor selection and TRM reflect contemporary international practice.

Breast cancer survival in New Zealand women.

PubMed

Campbell, Ian D; Scott, Nina; Seneviratne, Sanjeewa; Kollias, James; Walters, David; Taylor, Corey; Webster, Fleur; Zorbas, Helen; Roder, David M

2015-01-01

The Quality Audit (BQA) of Breast Surgeons of Australia and New Zealand includes a broad range of data and is the largest New Zealand (NZ) breast cancer (BC) database outside the NZ Cancer Registry. We used BQA data to compare BC survival by ethnicity, deprivation, remoteness, clinical characteristic and case load. BQA and death data were linked using the National Health Index. Disease-specific survival for invasive cases was benchmarked against Australian BQA data and NZ population-based survivals. Validity was explored by comparison with expected survival by risk factor. Compared with 93% for Australian audit cases, 5-year survival was 90% for NZ audit cases overall, 87% for Maori, 84% for Pacific and 91% for other. BC survival in NZ appears lower than in Australia, with inequities by ethnicity. Differences may be due to access, timeliness and quality of health services, patient risk profiles, BQA coverage and death-record methodology. © 2014 Royal Australasian College of Surgeons.

Trials with patient-reported outcomes registered on the Australian New Zealand Clinical Trials Registry (ANZCTR).

PubMed

Mercieca-Bebber, Rebecca; Williams, Douglas; Tait, Margaret-Ann; Roydhouse, Jessica; Busija, Lucy; Sundaram, Chindhu Shunmuga; Wilson, Michelle; Langford, Ailsa; Rutherford, Claudia; Roberts, Natasha; King, Madeleine; Vodicka, Elisabeth; Devine, Beth

2018-06-18

It is important to understand the number, types and regions of trials that include patient-reported outcomes (PROs) to appreciate how patient experiences have been considered in studies of health and interventions. Twenty-seven percent of trials registered with ClinicalTrials.gov (2007-2013) included PROs; however, a regional breakdown was not provided and no reviews have been conducted of the Australia New Zealand Clinical Trials Registry (ANZCTR). We aimed to identify trials registered with ANZCTR with PRO endpoints and describe their characteristics. ANZCTR was systematically searched from inception (2005) to 31 March 2017 for trials with PRO endpoints. Search terms included PRO measures listed in Patient-Reported Outcomes Quality of Life Instrument Database and Grid-Enabled Measures, as well as generic PRO terms (e.g. "quality of life" (QOL)). Trial endpoints were individually coded using an established framework to identify trials with PROs for the analysis. Of 13,666 registered trials, 6168 (45.1%) included a PRO. The proportion of studies including PROs increased between 2006 and 2016 (r = 0.74, p = 0.009). Among the 6168 trials, there were 17,961 individual PRO endpoints, including symptoms/functional outcomes/condition-specific QOL (65.6%), generic QOL (13.2%), patient-reported experiences (9.9%), patient-reported behaviours (7.9%). Mental health was the most common category (99.8% included PROs), followed by physical medicine/rehabilitation (65.6%), musculoskeletal (63.5%), public health (63.1%), and cancer (54.2%). Our findings suggest growing use of PROs in the assessment of health and interventions in ANZ. Our review identifies trial categories with limited patient-reported information and provides a basis for future work on the impact of PRO findings in clinical care.

The Psoriatic Arthritis Registry of Turkey: results of a multicentre registry on 1081 patients.

PubMed

Kalyoncu, Umut; Bayindir, Özün; Ferhat Öksüz, Mustafa; Doğru, Atalay; Kimyon, Gezmiş; Tarhan, Emine Figen; Erden, Abdulsamet; Yavuz, Şule; Can, Meryem; Çetin, Gözde Yıldırım; Kılıç, Levent; Küçükşahin, Orhan; Omma, Ahmet; Ozisler, Cem; Solmaz, Dilek; Bozkirli, Emine Duygu Ersözlü; Akyol, Lütfi; Pehlevan, Seval Masatlıoğlu; Gunal, Esen Kasapoglu; Arslan, Fatos; Yılmazer, Barış; Atakan, Nilgun; Aydın, Sibel Zehra

2017-02-01

The aim was to assess the characteristics of PsA, find out how well the disease is controlled in real life, demonstrate the treatments and identify the unmet needs. The PsA registry of Turkey is a multicentre Web-based registry established in 2014 and including 32 rheumatology centres. Detailed data regarding demographics for skin and joint disease, disease activity assessments and treatment choices were collected. One thousand and eighty-one patients (64.7% women) with a mean (sd) PsA duration of 5.8 (6.7) years were enrolled. The most frequent type of PsA was polyarticular [437 (40.5%)], followed by oligoarticular [407 (37.7%)] and axial disease [372 (34.4%)]. The mean (sd) swollen and tender joint counts were 1.7 (3) and 3.6 (4.8), respectively. Of these patients, 38.6% were on conventional synthetic DMARD monotherapy, 7.1% were on anti-TNF monotherapy, and 22.5% were using anti-TNF plus conventional synthetic DMARD combinations. According to DAS28, 86 (12.4%) patients had high and 105 (15.2%) had moderate disease activity. Low disease activity was achieved in 317 (45.7%) patients, and 185 (26.7%) were in remission. Minimal disease activity data could be calculated in 247 patients, 105 of whom (42.5%) had minimal disease activity. The major differences among sexes were that women were older and had less frequent axial disease, more fatigue, higher HAQ scores and less remission. The PsA registry of Turkey had similarities with previously published registries, supporting its external validity. The finding that women had more fatigue and worse functioning as well as the high percentage of active disease state highlight the unmet need in treatment of PsA. © The Author 2016. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

The utility of international shoulder joint replacement registries and databases: a comparative analytic review of two hundred and sixty one thousand, four hundred and eighty four cases.

PubMed

Bayona, Carlos Eduardo Afanador; Somerson, Jeremy S; Matsen, Frederick A

2018-02-01

National registries are valuable tools for understanding the results of shoulder arthroplasty across populations. These databases provide an unselected view of shoulder joint replacement within geographical areas that cannot be obtained from case series or prospective studies. They can be particularly helpful in determining which diagnoses, patients, procedures, and prostheses have higher than expected rates of revision. In an attempt to determine the generalizability of registry data, we asked, 'how similar are the patients and procedures among the different national registries?' We analyzed national shoulder arthroplasty registries and databases accessed via Internet portals and through a PubMed literature search. Seven national/regional registries and five publications regarding national shoulder arthroplasty data were identified; these sources contained a combined total of 261,484 shoulder arthroplasty cases. The percentages of hemiarthroplasty, anatomic (aTSA) and reverse total shoulders (rTSA), the diagnoses leading to arthroplasty, the mean patient age, and the distribution of patient gender varied significantly among these different databases. This study indicates that the indications for and application of shoulder arthroplasty have important geographical variations and that these variations must be considered when comparing outcomes of shoulder arthroplasty from different locations. Without controlling for age, gender, diagnosis and procedure type, the results from one national registry may not be applicable to patients from a different location. In that national data provide the opportunity to reduce costs by identifying implants and procedures with higher failure rates, the funding of registries needs to be free of conflicts of interest.

A new universal, standardized implant database for product identification: a unique tool for arthroplasty registries.

PubMed

Blömer, Wilhelm; Steinbrück, Arnd; Schröder, Christian; Grothaus, Franz-Josef; Melsheimer, Oliver; Mannel, Henrich; Forkel, Gerhard; Eilers, Thomas; Liebs, Thoralf R; Hassenpflug, Joachim; Jansson, Volkmar

2015-07-01

Every joint registry aims to improve patient care by identifying implants that have an inferior performance. For this reason, each registry records the implant name that has been used in the individual patient. In most registries, a paper-based approach has been utilized for this purpose. However, in addition to being time-consuming, this approach does not account for the fact that failure patterns are not necessarily implant specific but can be associated with design features that are used in a number of implants. Therefore, we aimed to develop and evaluate an implant product library that allows both time saving barcode scanning on site in the hospital for the registration of the implant components and a detailed description of implant specifications. A task force consisting of representatives of the German Arthroplasty Registry, industry, and computer specialists agreed on a solution that allows barcode scanning of implant components and that also uses a detailed standardized classification describing arthroplasty components. The manufacturers classified all their components that are sold in Germany according to this classification. The implant database was analyzed regarding the completeness of components by algorithms and real-time data. The implant library could be set up successfully. At this point, the implant database includes more than 38,000 items, of which all were classified by the manufacturers according to the predefined scheme. Using patient data from the German Arthroplasty Registry, several errors in the database were detected, all of which were corrected by the respective implant manufacturers. The implant library that was developed for the German Arthroplasty Registry allows not only on-site barcode scanning for the registration of the implant components but also its classification tree allows a sophisticated analysis regarding implant characteristics, regardless of brand or manufacturer. The database is maintained by the implant manufacturers

[Pain registries and similar data collections : A systematic review].

PubMed

Freytag, A; Scriba, B; Kaiser, U; Meißner, W

2016-12-01

Registries and similar data collections are a valuable addition to prospective studies as they provide data from real life treatment. In pain medicine only few such data collections exist so far. Aim of the study was to identify German-language registries or similar data collections that record patient-reported and pain-associated outcomes together with other data. A systematic search was carried out, which included the following sources: the data bases PubMed/MEDLINE and Embase, the German Registry for Clinical Trials (DRKS), ClinicalTrials.gov and registry portals known to us. Furthermore, an extended internet search was carried out via Google Scholar. References from personal scientific contacts and from operators of registries were also included. Questionnaires regarding registry items were sent to registry operators. Out of 381 search hits, 37 potentially relevant projects received a questionnaire and 35 answered. From the 35 responders 23 registries or similar data collections fulfilling inclusion criteria could be identified: 5 primarily pain-associated, 3 therapy-associated, 2 population-associated and 13 disease-associated (rheumatism/arthritis 5, joints/spine 4, hernias 1 and cancer 3). The reader obtains contact information on relevant data collections associated with pain, the contents, objectives and the pain assessment instruments applied. This review could give an important impulse for increased networking in health services research on pain. A limitation of the study was that identification of registries was made difficult due to an inconsistent definition and application of the term "registry", incomplete or insufficiently updated registry portals, missing scientific publications as well as two non-responders.

Associations between socioeconomic status and primary total knee joint replacements performed for osteoarthritis across Australia 2003-10: data from the Australian Orthopaedic Association National Joint Replacement Registry.

PubMed

Brennan, Sharon L; Lane, Stephen E; Lorimer, Michelle; Buchbinder, Rachelle; Wluka, Anita E; Page, Richard S; Osborne, Richard H; Pasco, Julie A; Sanders, Kerrie M; Cashman, Kara; Ebeling, Peter R; Graves, Stephen E

2014-10-28

Relatively little is known about the social distribution of total knee joint replacement (TKR) uptake in Australia. We examine associations between socioeconomic status (SES) and TKR performed for diagnosed osteoarthritis 2003-10 for all Australian males and females aged ≥ 30 yr. Data of primary TKR (n=213,018, 57.4% female) were ascertained from a comprehensive national joint replacement registry. Residential addresses were matched to Australian Census data to identify area-level social disadvantage, and categorised into deciles. Estimated TKR rates were calculated. Poisson regression was used to model the relative risk (RR) of age-adjusted TKR per 1,000py, stratified by sex and SES. A negative relationship was observed between TKR rates and SES deciles. Females had a greater rate of TKR than males. Surgery utilisation was greatest for all adults aged 70-79 yr. In that age group differences in estimated TKR per 1,000py between deciles were greater for 2010 than 2003 (females: 2010 RR 4.32 and 2003 RR 3.67; males: 2010 RR 2.04 and 2003 RR 1.78). Identifying factors associated with TKR utilisation and SES may enhance resource planning and promote surgery utilisation for end-stage osteoarthritis.

The development of the NZ-based international upper limb surgery registry.

PubMed

Sinnott, K A; Dunn, J A; Rothwell, A G; Hall, A S; Post, M W M

2014-08-01

Implementation study. To describe the development and potential value of the New Zealand (NZ) upper limb surgery registry and report the demographic and spinal cord injury characteristics of individuals with tetraplegia collated to date. Multi Center-coordinated from Burwood Spinal Unit, NZ. Following discussions with eight international units, clinical information and outcomes measures were agreed upon for use in this specific population. To implement this consensus, a web-based upper limb surgery registry was developed in NZ. Inclusion criteria included referral to a hand clinic for clinical assessment for suitability for tendon transfer surgery. Clinical data were collected regardless of acceptance of surgery thereby creating a self-selected control group. Twenty-eight years of retrospective NZ data was entered into the registry, as well as 3 years of prospective data collected in NZ. From 1982 to 2013, a total of 357 persons with tetraplegia were assessed as suitable for surgery. Of those, 223 individuals underwent surgery and 134 declined the intervention(s). The prospective group currently comprises 55 assessments with 23 surgery individuals and 32 who have declined surgery to date. Clinical information is now available within a web-based registry for all individuals reviewed in hand clinics from when upper limb surgery was first introduced. A broad range of outcomes of interest can easily be reported directly from the registry. The self-selected control group will allow comparative studies to be explicitly linked to the specific interventions of interest.

Ethical aspects of registry-based research in the Nordic countries.

PubMed

Ludvigsson, Jonas F; Håberg, Siri E; Knudsen, Gun Peggy; Lafolie, Pierre; Zoega, Helga; Sarkkola, Catharina; von Kraemer, Stephanie; Weiderpass, Elisabete; Nørgaard, Mette

2015-01-01

National health care registries in the Nordic countries share many attributes, but different legal and ethical frameworks represent a challenge to promoting effective joint research. Internationally, there is a lack of knowledge about how ethical matters are considered in Nordic registry-based research, and a lack of knowledge about how Nordic ethics committees operate and what is needed to obtain an approval. In this paper, we review ethical aspects of registry-based research, the legal framework, the role of ethics review boards in the Nordic countries, and the structure of the ethics application. We discuss the role of informed consent in registry-based research and how to safeguard the integrity of study participants, including vulnerable subjects and children. Our review also provides information on the different government agencies that contribute registry-based data, and a list of the major health registries in Denmark, Finland, Iceland, Norway, and Sweden. Both ethical values and conditions for registry-based research are similar in the Nordic countries. While Denmark, Finland, Iceland, Norway, and Sweden have chosen different legal frameworks, these differences can be resolved through mutual recognition of ethical applications and by harmonizing the different systems, likely leading to increased collaboration and enlarged studies.

Ethical aspects of registry-based research in the Nordic countries

PubMed Central

Ludvigsson, Jonas F; Håberg, Siri E; Knudsen, Gun Peggy; Lafolie, Pierre; Zoega, Helga; Sarkkola, Catharina; von Kraemer, Stephanie; Weiderpass, Elisabete; Nørgaard, Mette

2015-01-01

National health care registries in the Nordic countries share many attributes, but different legal and ethical frameworks represent a challenge to promoting effective joint research. Internationally, there is a lack of knowledge about how ethical matters are considered in Nordic registry-based research, and a lack of knowledge about how Nordic ethics committees operate and what is needed to obtain an approval. In this paper, we review ethical aspects of registry-based research, the legal framework, the role of ethics review boards in the Nordic countries, and the structure of the ethics application. We discuss the role of informed consent in registry-based research and how to safeguard the integrity of study participants, including vulnerable subjects and children. Our review also provides information on the different government agencies that contribute registry-based data, and a list of the major health registries in Denmark, Finland, Iceland, Norway, and Sweden. Both ethical values and conditions for registry-based research are similar in the Nordic countries. While Denmark, Finland, Iceland, Norway, and Sweden have chosen different legal frameworks, these differences can be resolved through mutual recognition of ethical applications and by harmonizing the different systems, likely leading to increased collaboration and enlarged studies. PMID:26648756

The Brazilian Twin Registry.

PubMed

Ferreira, Paulo H; Oliveira, Vinicius C; Junqueira, Daniela R; Cisneros, Lígia C; Ferreira, Lucas C; Murphy, Kate; Ordoñana, Juan R; Hopper, John L; Teixeira-Salmela, Luci F

2016-12-01

The Brazilian Twin Registry (BTR) was established in 2013 and has impelled twin research in South America. The main aim of the initiative was to create a resource that would be accessible to the Brazilian scientific community as well as international researchers interested in the investigation of the contribution of genetic and environmental factors in the development of common diseases, phenotypes, and human behavior traits. The BTR is a joint effort between academic and governmental institutions from Brazil and Australia. The collaboration includes the Federal University of Minas Gerais (UFMG) in Brazil, the University of Sydney and University of Melbourne in Australia, the Australian Twin Registry, as well as the research foundations CNPq and CAPES in Brazil. The BTR is a member of the International Network of Twin Registries. Recruitment strategies used to register twins have been through participation in a longitudinal study investigating genetic and environmental factors for low back pain occurrence, and from a variety of sources including media campaigns and social networking. Currently, 291 twins are registered in the BTR, with data on demographics, zygosity, anthropometrics, and health history having been collected from 151 twins using a standardized self-reported questionnaire. Future BTR plans include the registration of thousands of Brazilian twins identified from different sources and collaborate nationally and internationally with other research groups interested on twin studies.

Electromyographic analyses of muscle pre-activation induced by single joint exercise.

PubMed

Júnior, Valdinar A R; Bottaro, Martim; Pereira, Maria C C; Andrade, Marcelino M; P Júnior, Paulo R W; Carmo, Jake C

2010-01-01

To investigate whether performing a low-intensity, single-joint exercises for knee extensors was an efficient strategy for increasing the number of motor units recruited in the vastus lateralis muscle during a subsequent multi-joint exercises. Nine healthy male participants (23.33+/-3.46 yrs) underwent bouts of exercise in which knee extension and 45 degrees , and leg press exercises were performed in sequence. In the low-intensity bout (R30), 15 unilateral knee extensions were performed, followed by 15 repetitions of the leg presses at 30% and 60% of one maximum repetition load (1-MR), respectively. In the high-intensity bout (R60), the same sequence was performed, but the applied load was 60% of 1-MR for both exercises. A single set of 15 repetitions of the leg press at 60% of 1-MR was performed as a control exercise (CR). The surface electromyographic signals of the vastus lateralis muscle were recorded by means of a linear electrode array. The root mean square (RMS) values were determined for each repetition of the leg press, and linear regressions were calculated from these results. The slopes of the straight lines obtained were then normalized using the linear coefficients of the regression equations and compared using one-way ANOVAs for repeated measures. The slopes observed in the CR were significantly lower than those in the R30 and R60 (p<0.05). The results indicated that the recruitment of motor units was more effective when a single-joint exercise preceded the multi-joint exercise. Article registered in the Australian New Zealand Clinical Trials Registry (ANZCTR) under the number ACTRN12609000413224.

Survival of Idiopathic Pulmonary Arterial Hypertension Patients in the Modern Era in Australia and New Zealand.

PubMed

Strange, Geoff; Lau, Edmund M; Giannoulatou, Eleni; Corrigan, Carolyn; Kotlyar, Eugene; Kermeen, Fiona; Williams, Trevor; Celermajer, David S; Dwyer, Nathan; Whitford, Helen; Wrobel, Jeremy P; Feenstra, John; Lavender, Melanie; Whyte, Kenneth; Collins, Nicholas; Steele, Peter; Proudman, Susanna; Thakkar, Vivek; Keating, Dominic; Keogh, Anne

2017-09-20

Epidemiology and treatment strategies continue to evolve in pulmonary arterial hypertension (PAH). We sought to define the characteristics and survival of patients with idiopathic, heritable and drug-induced PAH in the current management era. Consecutive cases of idiopathic, heritable and drug-induced PAH were prospectively enrolled into an Australian and New Zealand Registry. Between January 2012 and December 2016, a total of 220 incident cases were enrolled (mean age 57.2±18.7years, female 69.5%) and followed for a median duration of 26 months (IQR17-39). Co-morbidities were common such as obesity (34.1%), systemic hypertension (30.5%), coronary artery disease (16.4%) and diabetes mellitus (19.5%). Initial combination therapy was used in 54 patients (dual, n=50; triple, n=4). Estimated survival rates at 1-year, 2-years and 3-years were 95.6% (CI 92.8-98.5%), 87.3% (CI 82.5-92.4%) and 77.0% (CI 70.3-84.3%), respectively. Multivariate analysis showed that male sex and lower 6-minute distance at diagnosis independently predicted worse survival, whereas obesity was associated with improved survival. Co-morbidities other than obesity did not impact survival. Initial dual oral combination therapy was associated with a trend towards better survival compared with initial oral monotherapy (adjusted HR=0.27, CI 0.06-1.18, p=0.082) CONCLUSIONS: The epidemiology and survival of patients with idiopathic PAH in Australia and New Zealand are similar to contemporary registries reported in Europe and North America. Male sex and poorer exercise capacity are predictive of mortality whereas obesity appears to exert a protective effect. Despite current therapies, PAH remains a life-threatening disease associated with significant early mortality. Copyright © 2017 Australian and New Zealand Society of Cardiac and Thoracic Surgeons (ANZSCTS) and the Cardiac Society of Australia and New Zealand (CSANZ). All rights reserved.

Why Do Staff of Joint-Use Libraries Sometimes Fail to Integrate? Investigating Cultures and Ethics in a Public-Tertiary Joint-Use Library

ERIC Educational Resources Information Center

Calvert, Philip James

2010-01-01

Joint-use libraries have identified staff integration as a problem. Using focus groups, this project investigated the culture, professional ethics, and attitudes of staff in a public-tertiary joint-use library in Auckland, New Zealand. Findings show some difference in organizational cultures, but more variation at the lower level of roles and…

Constraining slip distributions and onset of shallow slow slip in New Zealand by joint inversions of onshore and offshore geodetic data.

NASA Astrophysics Data System (ADS)

Yohler, R. M.; Bartlow, N. M.; Wallace, L. M.; Williams, C. A.

2017-12-01

Investigation of slow slip events (SSEs) has become a useful tool for understanding plate boundary fault mechanics in subduction zones where the largest earthquakes occur. An area of specific importance is along the Hikurangi subduction zone in New Zealand, where repeating, known offshore and onshore slow slip patches have been identified since 2002 from the GeoNet cGPS array. Most models of offshore SSEs in New Zealand and elsewhere are solely constrained by these land-based cGPS arrays. This has led to models with poor resolution out near the trench of the subduction zone, where tsunami hazards are greatest. However, a year-long deployment of seafloor pressure sensors (titled "Hikurangi Ocean Bottom Investigation of Tremor and Slow Slip" (HOBITSS)) took place from mid-2014 to mid-2015 offshore of Gisborne, New Zealand and the northern Hikurangi subduction margin. In September 2014, a large SSE was recorded by the HOBITSS and onshore cGPS arrays which allowed for a slip model with better resolution near the trench [Wallace et al., Science, 2016]. Here we investigate the static and time-dependent slip distribution and propagation during the 2014 SSE by joint inversion of the HOBITSS ocean bottom pressure data and onshore cGPS data using the Network Inversion Filter (NIF). This inversion also incorporates more realistic elastic properties by generating Greens functions using the PyLith finite element code with material properties inferred from the New-Zealand wide seismic velocity model. The addition of the APG data and realistic elastic properties not only increased the slip amplitude during the SSE, but also suggests that the onset of the SSE is several days earlier than models predicted by only cGPS. Moreover, the addition of the APG data increased model resolution directly over the SSE by several cm. Additionally, we will also test ranges of possible slip distributions by using the moment bounding technique described in Johnson et al. 1994. While the NIF relies

Contemporary roles of registries in clinical cardiology: when do we need randomized trials?

PubMed

Ieva, Francesca; Gale, Chris P; Sharples, Linda D

2014-12-01

Clinical registries are established as tools for auditing clinical standards and benchmarking quality improvement initiatives. They also have an emerging role (as electronic health records) in cardiovascular research and, in particular, the conduct of RCTs. While the RCT is accepted as the most robust experimental design, observational data from clinical registries has become increasingly valuable for RCTs. Data from clinical registries may be used to augment results from RCTs, identify patients for recruitment and as an alternative when randomization is not practically possible or ethically desirable. Here the authors appraise the advantages and disadvantages of both methodologies, with the aim of clarifying when their joint use may be successful.

Trends in incidence of primary brain cancer in New Zealand, 1995 to 2010.

PubMed

Kim, Stella J-H; Ioannides, Sally J; Elwood, J Mark

2015-04-01

Case-control studies have linked mobile phone use to an increased risk of glioma in the most exposed brain areas, the temporal and parietal lobes, although inconsistently. We examined time trends in the incidence rates of brain malignancies in New Zealand from 1995 to 2010. Data from the New Zealand Cancer Registry was used to calculate incidence rates of primary brain cancer, by age, gender, morphology and anatomical site. Log-linear regression analysis was used to assess trends in the annual incidence of primary brain cancer; annual percentage changes and their 95% confidence intervals were estimated. No consistent increases in all primary brain cancer, glioma, or temporal or parietal lobe glioma were seen. At ages 10-69, the incidence of all brain cancers declined significantly. Incidence of glioma increased at ages over 70. In New Zealand, there has been no consistent increase in incidence rates of primary brain cancers. An increase in glioma at ages over 70 is likely to be due to improvements in diagnosis. As with any such studies, a small effect, or one with a latent period of more than 10 to 15 years, cannot be excluded. © 2015 Public Health Association of Australia.

Command and Control of Joint Air Operations. Some Lessons Learned from Four Case Studies of an Enduring Issue

DTIC Science & Technology

1991-01-01

New Zealand Air Force.4 To further complicate matters, General Douglas MacArthur, as Commander Southwest Pacific Area, and the adjoining theater...Army, Marine, and New Zealand officers and the top job was rotated fairly regularly among the services.10 By early 1943 a truly joint staff had...in joint air operations. 2C. Kenneth Allard, Command, Control, and the Common Defense, Yale University Press, New Haven, 1990. The authors strongly

The Survival of Total Knee Arthroplasty: Current Data from Registries on Tribology: Review Article.

PubMed

Civinini, Roberto; Carulli, Christian; Matassi, Fabrizio; Lepri, Andrea Cozzi; Sirleo, Luigi; Innocenti, Massimo

2017-02-01

Polyethylene (PE) wear is a major contributor to implant loosening following total knee arthroplasty (TKA), and advanced bearings in TKA are being investigated with hopes of reducing or eliminate wear-related loosening. Currently, information on knee tribology is available from national joint registries and may be the best tools to evaluate the efficacy and safety of design innovations in joint arthroplasty. We performed a review of national joint registries trying to answer the following questions: "Which is the main factor directly related to revisions rate in TKA?" and "Are there new bearing options better than conventional ones?" A review was performed of all published annual reports of National Joint Registers, as well as of the literature. The search was carried out using and comparing the National Joint Registers. Current data from registries for total knee arthroplasty indicates that age is the major factor affecting the outcome of primary total knee replacement. The 10-year cumulative revision rate for non-cross-linked PE was 5.8% and for XLPE it was 3.5%. The effect of cross-linked polyethylene was more evident in the younger patients. The survival of the oxidized zirconium (OxZr) femoral component appears better when compared to a similar age group of patients with conventional group of prostheses. Our review suggests that the revision rates are half for the OxZr components compared to conventional CoCr femoral components. Age is the most relevant single factor related to revision rate. Cross-linked PE has a statistical lower revision rate at 10 years compared to conventional PE and, in the OxZr group, the revision rate is 2 times lower than Co-Cr in the same group of age.

Patients with Staged Bilateral Total Joint Arthroplasty in Registries: Immortal Time Bias and Methodological Options.

PubMed

van der Pas, Stéphanie L; Nelissen, Rob G H H; Fiocco, Marta

2017-08-02

In arthroplasty data, patients with staged bilateral total joint arthroplasty (TJA) pose a problem in statistical analysis. Subgroup analysis, in which patients with unilateral and bilateral TJA are studied separately, is sometimes considered an appropriate solution to the problem; we aim to show that this is not true because of immortal time bias. We reviewed patients who underwent staged (at any time) bilateral TJA. The logical fallacy leading to immortal time bias is explained through a simple artificial data example. The cumulative incidences of revision and death are computed by subgroup analysis and by landmark analysis based on hip replacement data from the Dutch Arthroplasty Register and on simulated data sets. For patients who underwent unilateral TJA, subgroup analysis can lead to an overestimate of the cumulative incidence of death and an underestimate of the cumulative incidence of revision. The reverse conclusion holds for patients who underwent staged bilateral TJA. Analysis of these patients can lead to an underestimate of the cumulative incidence of death and an overestimate of the cumulative incidence of revision. Immortal time bias can be prevented by using landmark analysis. When examining arthroplasty registry data, patients who underwent staged bilateral TJA should be analyzed with caution. An appropriate statistical method to address the research question should be selected.

The role of the Therapeutic Goods Administration and the Medicine and Medical Devices Safety Authority in evaluating complementary and alternative medicines in Australia and New Zealand.

PubMed

Ghosh, Dilip; Skinner, Margot; Ferguson, Lynnette R

2006-04-03

Currently, the regulation of complementary and alternative medicines and related health claims in Australia and New Zealand is managed in a number of ways. Complementary medicines, including herbal, minerals, nutritional/dietary supplements, aromatherapy oils and homeopathic medicines are regulated under therapeutic goods/products legislation. The Therapeutic Goods Administration (TGA), a division of the Commonwealth Department of Health and Ageing is responsible for administering the provisions of the legislation in Australia. The New Zealand Medicines and Medical Devices Safety Authority (Medsafe) administers the provision of legislation in New Zealand. In December 2003 the Australian and New Zealand governments signed a Treaty to establish a single, bi-national agency to regulate therapeutic products, including medical devices prescription, over-the-counter and complementary medicines. A single agency will replace the Australian TGA and the New Zealand Medsafe. The role of the new agency will be to safeguard public health through regulation of the quality, safety and efficacy or performance of therapeutic products in both Australia and New Zealand. The major activities of the new joint Australia New Zealand therapeutic products agency are in product licensing, specifying labelling standards and setting the advertising scheme, together with determining the risk classes of medicines and creating an expanded list of ingredients permitted in Class I medicines. A new, expanded definition of complementary medicines is proposed and this definition is currently under consultation. Related Australian and New Zealand legislation is being developed to implement the joint scheme. Once this legislation is passed, the Treaty will come into force and the new joint regulatory scheme will begin. The agency is expected to commence operation no later than 1 July 2006 and will result in a single agency to regulate complementary and alternative medicines.

Patients with multiple traumatic amputations: An analysis of operation enduring freedom joint theatre trauma registry data.

PubMed

Godfrey, Brandon W; Martin, Ashley; Chestovich, Paul J; Lee, Gordon H; Ingalls, Nichole K; Saldanha, Vilas

2017-01-01

Improvised Explosive Devices (IED) are the primary wounding mechanism for casualties in Operation Enduring Freedom. Patients can sustain devastating traumatic amputations, which are unlike injuries seen in the civilian trauma sector. This is a database analysis of the largest patient registry of multiple traumatic amputations. The Joint Theater Trauma Registry was queried for patients with a traumatic amputation from 2009 to 2012. Data obtained included the Injury Severity Score (ISS), Glasgow Coma Score (GCS), blood products, transfer from theatre, and complications including DVT, PE, infection (Acinetobacter and fungal), acute renal failure, and rhabdomyolysis. Comparisons were made between number of major amputations (1-4) and specific outcomes using χ 2 and Pearson's rank test, and multivariable logistic regression was performed for 30-day survival. Significance was considered with p<0.05. We identified 720 military personnel with at least one traumatic amputation: 494 single, 191 double, 32 triple, and 3 quad amputees. Average age was 24.3 years (18-46), median ISS 24 (9-66), and GCS 15 (3-15). Tranexamic acid (TXA) was administered in 164 patients (23%) and tourniquets were used in 575 (80%). Both TXA and tourniquet use increased with increasing number of amputations (p<0.001). Average transfusion requirements (in units) were packed red blood cells (PRBC) 18.6 (0-142), fresh frozen plasma (FFP) 17.3 (0-128), platelets 3.6 (0-26), and cryoprecipitate 5.6 (0-130). Transfusion of all blood products increased with the number of amputations (p<0.001). All complications tested increased with the number of amputations except Acinetobacter infection, coagulopathy, and compartment syndrome. Transfer to higher acuity facilities was achieved in 676 patients (94%). Traumatic amputations from blast injuries require significant blood product transfusion, which increases with the number of amputations. Most complications also increase with the number of amputations

Should we all go to the PROM? The first two years of the British Spine Registry.

PubMed

Breakwell, L M; Cole, A A; Birch, N; Heywood, C

2015-07-01

The effective capture of outcome measures in the healthcare setting can be traced back to Florence Nightingale's investigation of the in-patient mortality of soldiers wounded in the Crimean war in the 1850s. Only relatively recently has the formalised collection of outcomes data into Registries been recognised as valuable in itself. With the advent of surgeon league tables and a move towards value based health care, individuals are being driven to collect, store and interpret data. Following the success of the National Joint Registry, the British Association of Spine Surgeons instituted the British Spine Registry. Since its launch in 2012, over 650 users representing the whole surgical team have registered and during this time, more than 27 000 patients have been entered onto the database. There has been significant publicity regarding the collection of outcome measures after surgery, including patient-reported scores. Over 12 000 forms have been directly entered by patients themselves, with many more entered by the surgical teams. Questions abound: who should have access to the data produced by the Registry and how should they use it? How should the results be reported and in what forum? ©2015 The British Editorial Society of Bone & Joint Surgery.

eRegistries: Electronic registries for maternal and child health.

PubMed

Frøen, J Frederik; Myhre, Sonja L; Frost, Michael J; Chou, Doris; Mehl, Garrett; Say, Lale; Cheng, Socheat; Fjeldheim, Ingvild; Friberg, Ingrid K; French, Steve; Jani, Jagrati V; Kaye, Jane; Lewis, John; Lunde, Ane; Mørkrid, Kjersti; Nankabirwa, Victoria; Nyanchoka, Linda; Stone, Hollie; Venkateswaran, Mahima; Wojcieszek, Aleena M; Temmerman, Marleen; Flenady, Vicki J

2016-01-19

The Global Roadmap for Health Measurement and Accountability sees integrated systems for health information as key to obtaining seamless, sustainable, and secure information exchanges at all levels of health systems. The Global Strategy for Women's, Children's and Adolescent's Health aims to achieve a continuum of quality of care with effective coverage of interventions. The WHO and World Bank recommend that countries focus on intervention coverage to monitor programs and progress for universal health coverage. Electronic health registries - eRegistries - represent integrated systems that secure a triple return on investments: First, effective single data collection for health workers to seamlessly follow individuals along the continuum of care and across disconnected cadres of care providers. Second, real-time public health surveillance and monitoring of intervention coverage, and third, feedback of information to individuals, care providers and the public for transparent accountability. This series on eRegistries presents frameworks and tools to facilitate the development and secure operation of eRegistries for maternal and child health. In this first paper of the eRegistries Series we have used WHO frameworks and taxonomy to map how eRegistries can support commonly used electronic and mobile applications to alleviate health systems constraints in maternal and child health. A web-based survey of public health officials in 64 low- and middle-income countries, and a systematic search of literature from 2005-2015, aimed to assess country capacities by the current status, quality and use of data in reproductive health registries. eRegistries can offer support for the 12 most commonly used electronic and mobile applications for health. Countries are implementing health registries in various forms, the majority in transition from paper-based data collection to electronic systems, but very few have eRegistries that can act as an integrating backbone for health

Ensuring quality in studies linking cancer registries and biobanks.

PubMed

Langseth, Hilde; Luostarinen, Tapio; Bray, Freddie; Dillner, Joakim

2010-04-01

The Nordic countries have a long tradition of providing comparable and high quality cancer data through the national population-based cancer registries and the capability to link the diverse large-scale biobanks currently in operation. The joining of these two infrastructural resources can provide a study base for large-scale studies of etiology, treatment and early detection of cancer. Research projects based on combined data from cancer registries and biobanks provides great opportunities, but also presents major challenges. Biorepositories have become an important resource in molecular epidemiology, and the increased interest in performing etiological, clinical and gene-environment-interaction studies, involving information from biological samples linked to population-based cancer registries, warrants a joint evaluation of the quality aspects of the two resources, as well as an assessment of whether the resources can be successfully combined into a high quality study. While the quality of biospecimen handling and analysis is commonly considered in different studies, the logistics of data handling including the linkage of the biobank with the cancer registry is an overlooked aspect of a biobank-based study. It is thus the aim of this paper to describe recommendations on data handling, in particular the linkage of biobank material to cancer registry data and the quality aspects thereof, based on the experience of Nordic collaborative projects combining data from cancer registries and biobanks. We propose a standard documentation with respect to the following topics: the quality control aspects of cancer registration, the identification of cases and controls, the identification and use of data confounders, the stability of serum components, historical storage conditions, aliquoting history, the number of freeze/thaw cycles and available volumes.

Methodological Challenges When Comparing Demographic and Clinical Characteristics of International Observational Registries.

PubMed

Verstappen, Suzanne M M; Askling, Johan; Berglind, Niklas; Franzen, Stefan; Frisell, Thomas; Garwood, Christopher; Greenberg, Jeffrey D; Holmqvist, Marie; Horne, Laura; Lampl, Kathy; Michaud, Kaleb; Nyberg, Fredrik; Pappas, Dimitrios A; Reed, George; Symmons, Deborah P M; Tanaka, Eiichi; Tran, Trung N; Yamanaka, Hisashi; Ho, Meilien

2015-12-01

Comparisons of data from different registries can be helpful in understanding variations in many aspects of rheumatoid arthritis (RA). The study aim was to assess and improve the comparability of demographic, clinical, and comorbidity data from 5 international RA registries. Using predefined definitions, 2 subsets of patients (main cohort and subcohort) from 5 international observational registries (Consortium of Rheumatology Researchers of North America Registry [CORRONA], the Swedish Rheumatology Quality of Care Register [SRR], the Norfolk Arthritis Register [NOAR], the Institute of Rheumatology Rheumatoid Arthritis cohort [IORRA], and CORRONA International) were evaluated and compared. Patients ages >18 years with RA, and present in or recruited to the registry from January 1, 2000, were included in the main cohort. Patients from the main cohort with positive rheumatoid factor and/or erosive RA who had received ≥1 synthetic disease-modifying antirheumatic drug (DMARD), and switched to or added another DMARD, were included in the subcohort at time of treatment switch. Age and sex distributions were fairly similar across the registries. The percentage of patients with a high Disease Activity Score in 28 joints score varied between main cohorts (17.5% IORRA, 18.9% CORRONA, 24.7% NOAR, 27.7% CORRONA International, and 36.8% SRR), with IORRA, CORRONA, and CORRONA International including more prevalent cases of RA; the differences were smaller for the subcohort. Prevalence of comorbidities varied across registries (e.g., coronary artery disease ranged from 1.5% in IORRA to 7.9% in SRR), partly due to the way comorbidity data were captured and general cultural differences; the pattern was similar for the subcohorts. Despite different inclusion criteria for the individual RA registries, it is possible to improve the comparability and interpretability of differences across RA registries by applying well-defined cohort definitions. © 2015, American College of

A descriptive analysis of data from the Department of Defense Joint Trauma System Prehospital Trauma Registry.

PubMed

Schauer, Stephen G; April, Michael D; Naylor, Jason F; Oliver, Joshua J; Cunningham, Cord W; Fisher, Andrew D; Kotwal, Russ S

2017-01-01

The active battlefield is an environment of chaos and confusion. Depending on the scale of combat, the chaos and confusion often extend into the prehospital combat setting with multiple personnel and units involved in the chain of care of casualties. The chaos of the prehospital combat setting has led to limitations in the availability of data for performance improvement and research. The Department of Defense (DoD) Joint Trauma System (JTS) Prehospital Trauma Registry (PHTR) was developed in conjunction with the updated Tactical Combat Casualty Care (TCCC) card and a TCCC after action report (AAR), and currently serves as the prehospital repository and module of the DoD Trauma Registry (DoDTR). We conducted a descriptive analysis of data from the DoDTR PHTR. The JTS collected trauma-associated data which comprise the PHTR are consolidated from TCCC cards and TCCC AARs. Where possible (requires 2 patient identifiers), JTS linked data from the PHTR module to other modules in the DoDTR to maximize availability of prehospital data and gain additional information regarding clinical outcomes. From January 2013 through September 2014, there were 705 patients available for research, of which 94.8% (668/705) had data from TCCC AARs, 3.3% (23/705) had data from TCCC cards, and 2.0% (14/705) had data available from DoDTR collection forms. There were one or more of the following data points per subject: pulse rate (77.4%, n=546), blood pressure (75.9%, n=535), respiratory rate (76.5%, n=539), pulse oximetry (61.8%, n=436), mental status (96.0%, n=677) and pain score (24.5%, n=173). Only 42.4% (647/1,527) of vital sign metrics had an associated time stamp. Documented interventions included limb tourniquets, of which only 27.3% (113/414) had an associated documentation of application time. Only 27.0% (190/705) of patients in the PHTR could be linked to the DoDTR due to missing identifiers. The PHTR data capture was suboptimal with many patients lacking documentation of vital

National variation in coronary angiography rates and timing after an acute coronary syndrome in New Zealand (ANZACS-QI 6).

PubMed

Williams, Michael J A; Harding, Scott A; Devlin, Gerard; Nunn, Chris; El-Jack, Sief; Scott, Tony; Lee, Mildred; Kerr, Andrew J

2016-01-08

The New Zealand Cardiac Clinical Network and the Ministry of Health recommend a "3-day door-to-catheter target" for acute coronary syndromes (ACS) admissions, requiring that at least 70% of ACS patients referred for invasive coronary angiography (ICA) undergo this within 3 days of hospital admission. We assessed the variability in use of ICA, timing of ICA, and duration of hospital admission across New Zealand District Health Boards (DHBs). All patients admitted to all New Zealand public hospitals with suspected ACS undergoing ICA over 1 year ending November 2014 had demographic, risk factor, and diagnostic data collected prospectively using the All New Zealand Acute Coronary Syndrome Quality Improvement (ANZACS-QI) registry. Complete datasets were available in 7,988 (98.4%) patients. DHBs were categorised as those able to perform percutaneous coronary intervention on-site (intervention-capable) or not. There was a near two-fold variation between DHBs in the age standardised rate (ASR) of ICA ranging from 16.8 per 10,000 to 34.1 per 10,000 population (New Zealand rate; 27.9 per 10,000). Patients in intervention-capable DHBs had a 30% higher ASR of ICA. The proportion of ACS patients meeting the 3-day target ranged from 56.7% to 92.9% (New Zealand; 76.4%). Those in intervention-capable DHBs were more likely to meet the target (78.7% vs 68.0%, p<0.0001) and spent 0.84 days (p<.0001) less in hospital. There is a considerable variation in the rate and timing of ICA in New Zealand. Patients with ACS admitted to DHBs without interventional-capability are disadvantaged. New initiatives to correct this discrepancy are needed.

Voices from Manukau: Recruitment and Success of Traditionally under Represented Undergraduate Groups in New Zealand

ERIC Educational Resources Information Center

Millward, Pam; Stephenson, Maxine S.; Rio, Nane; Anderson, Helen

2011-01-01

This paper describes a research project, "Voices from Manukau", that investigated the impact of a joint initiative by a university and an institute of technology in New Zealand. The purpose of the initiative was to increase the participation of students traditionally under represented at tertiary-level study, particularly Maori…

Feasibility of comparing core data from existing trauma registries in scandinavia. Reaching for a Scandinavian major trauma outcome study (MTOS).

PubMed

Ringdal, K G; Lossius, H M

2007-01-01

The organisation of trauma care in Scandinavia has several similarities, including trauma registries, but so far there are limited amount of research on efficiency and outcome. Data and results from trauma outcome studies like the US MTOS are not fully applicable to the Scandinavian trauma population. To reveal the feasibility of using data from existing trauma registries of major hospitals in Scandinavia, for a minimal common dataset, in a joint, prospective Scandinavian MTOS. We collected data points, data point definitions, and inclusion/exclusion criteria, from the major trauma registries of the Swedish trauma registry standard, three university hospitals in Denmark, one university hospital in Finland, and the Norwegian National Trauma Registry. The collected material was compared to reveal common data points, inclusion criteria, and the compatibility of data point definitions. The median number of data points was 147 (range 71-257; interquartile range = 90-205). Most registries lacked precise data definition catalogues. Only 16 data points could be considered as common, of which just a few were core trauma data. Four data points had the same data category options but were not considered having the same data point definitions. The inclusion criteria were not uniform. Trauma registries in Scandinavia have few common core data and data point definitions. There were data points for calculating the Trauma and Injury Severity Score (TRISS) but the inclusion criteria varied too much to ensure a valid comparison. A consensus process for a joint trauma core data set will be initiated by the Scandinavian Networking Group for Trauma and Emergency Management (SCANTEM) to increase research on trauma efficiency and outcome.

Comparison of oropharyngeal and oral cavity squamous cell cancer incidence and trends in New Zealand and Queensland, Australia.

PubMed

Elwood, J Mark; Youlden, Danny R; Chelimo, Carol; Ioannides, Sally J; Baade, Peter D

2014-02-01

Increases in the incidence of squamous cell oropharyngeal cancer (OPC) have been reported from some countries, but have not been assessed in Australia or New Zealand. This study examines trends for squamous cell OPC and squamous cell oral cavity cancer (OCC) in two similarly sized populations, New Zealand and Queensland, Australia. Incidence data for 1982-2010 were obtained from the respective population-based cancer registries for squamous cell OPC and OCC, by subsite, sex, and age. Time trends and annual percentage changes (APCs) were assessed by joinpoint regression. The incidence rates of squamous cell OPC in males in New Zealand since 2005 and Queensland since 2006 have increased rapidly, with APCs of 11.9% and 10.6% respectively. The trends were greatest at ages 50-69 and followed more gradual increases previously. In females, rates increased by 2.1% per year in New Zealand from 1982, but by only 0.9% (not significant) in Queensland. In contrast, incidence rates for OCC decreased by 1.2% per year in males in Queensland since 1982, but remained stable for females in Queensland and for both sexes in New Zealand. Overall, incidence rates for both OCC and OPC were substantially higher in Queensland than in New Zealand. In males in both areas, OPC incidence is now higher than that of OCC. Incidence rates of squamous cell OPC have increased rapidly in men, while rates of OCC have been stable or reducing, showing distinct etiologies. This has both clinical and public health importance, including implications for the extension of human papilloma virus (HPV) vaccination to males. Copyright © 2014 Elsevier Ltd. All rights reserved.

Ceramic-on-ceramic bearing fractures in total hip arthroplasty: an analysis of data from the National Joint Registry.

PubMed

Howard, D P; Wall, P D H; Fernandez, M A; Parsons, H; Howard, P W

2017-08-01

Ceramic-on-ceramic (CoC) bearings in total hip arthroplasty (THA) are commonly used, but concerns exist regarding ceramic fracture. This study aims to report the risk of revision for fracture of modern CoC bearings and identify factors that might influence this risk, using data from the National Joint Registry (NJR) for England, Wales, Northern Ireland and the Isle of Man. We analysed data on 223 362 bearings from 111 681 primary CoC THAs and 182 linked revisions for bearing fracture recorded in the NJR. We used implant codes to identify ceramic bearing composition and generated Kaplan-Meier estimates for implant survivorship. Logistic regression analyses were performed for implant size and patient specific variables to determine any associated risks for revision. A total of 222 852 bearings (99.8%) were CeramTec Biolox products. Revisions for fracture were linked to seven of 79 442 (0.009%) Biolox Delta heads, 38 of 31 982 (0.119%) Biolox Forte heads, 101 of 80 170 (0.126%) Biolox Delta liners and 35 of 31 258 (0.112%) Biolox Forte liners. Regression analysis of implant size revealed smaller heads had significantly higher odds of fracture (chi-squared 68.0, p < 0.001). The highest fracture risk was observed in the 28 mm Biolox Forte subgroup (0.382%). There were no fractures in the 40 mm head group for either ceramic type. Liner thickness was not predictive of fracture (p = 0.67). Body mass index (BMI) was independently associated with revision for both head fractures (odds ratio (OR) 1.09 per unit increase, p = 0.031) and liner fractures (OR 1.06 per unit increase, p = 0.006). We report the largest independent study of CoC bearing fractures to date. The risk of revision for CoC bearing fracture is very low but previous studies have underestimated this risk. There is good evidence that the latest generation of ceramic has greatly reduced the odds of head fracture but not of liner fracture. Small head size and high patient BMI are associated with an increased

Description of the ambulance services participating in the Aus-ROC Australian and New Zealand out-of-hospital cardiac arrest Epistry.

PubMed

Beck, Ben; Bray, Janet E; Smith, Karen; Walker, Tony; Grantham, Hugh; Hein, Cindy; Thorrowgood, Melanie; Smith, Anthony; Inoue, Madoka; Smith, Tony; Dicker, Bridget; Swain, Andy; Bosley, Emma; Pemberton, Katherine; McKay, Michael; Johnston-Leek, Malcolm; Cameron, Peter; Perkins, Gavin D; Finn, Judith

2016-12-01

The present study aimed to describe and examine similarities and differences in the current service provision and resuscitation protocols of the ambulance services participating in the Aus-ROC Australian and New Zealand out-of-hospital cardiac arrest (OHCA) Epistry. Understanding these similarities and differences is important in identifying ambulance service factors that might explain regional variation in survival of OHCA in the Aus-ROC Epistry. A structured questionnaire was completed by each of the ambulance services participating in the Aus-ROC Epistry. These ambulance services were SA Ambulance Service, Ambulance Victoria, St John Ambulance Western Australia, Queensland Ambulance Service, St John Ambulance NT, St John New Zealand and Wellington Free Ambulance. The survey aimed to describe ambulance service and dispatch characteristics, resuscitation protocols and details of cardiac arrest registries. We observed similarities between services with respect to the treatment of OHCA and dispatch systems. Differences between services were observed in the serviced population; the proportion of paramedics with basic life support, advanced life support or intensive care training skills; the number of OHCA cases attended; guidelines related to withholding or terminating resuscitation attempts; and the variables that might be used to define 'attempted resuscitation'. All seven participating ambulance services were noted to have existing OHCA registries. There is marked variation between ambulance services currently participating in the Aus-ROC Australian and New Zealand OHCA Epistry with respect to workforce characteristics and key variable definitions. This variation between ambulance services might account for a proportion of the regional variation in survival of OHCA. © 2016 Australasian College for Emergency Medicine and Australasian Society for Emergency Medicine.

Second generation registry framework.

PubMed

Bellgard, Matthew I; Render, Lee; Radochonski, Maciej; Hunter, Adam

2014-01-01

Information management systems are essential to capture data be it for public health and human disease, sustainable agriculture, or plant and animal biosecurity. In public health, the term patient registry is often used to describe information management systems that are used to record and track phenotypic data of patients. Appropriate design, implementation and deployment of patient registries enables rapid decision making and ongoing data mining ultimately leading to improved patient outcomes. A major bottleneck encountered is the static nature of these registries. That is, software developers are required to work with stakeholders to determine requirements, design the system, implement the required data fields and functionality for each patient registry. Additionally, software developer time is required for ongoing maintenance and customisation. It is desirable to deploy a sophisticated registry framework that can allow scientists and registry curators possessing standard computing skills to dynamically construct a complete patient registry from scratch and customise it for their specific needs with little or no need to engage a software developer at any stage. This paper introduces our second generation open source registry framework which builds on our previous rare disease registry framework (RDRF). This second generation RDRF is a new approach as it empowers registry administrators to construct one or more patient registries without software developer effort. New data elements for a diverse range of phenotypic and genotypic measurements can be defined at any time. Defined data elements can then be utilised in any of the created registries. Fine grained, multi-level user and workgroup access can be applied to each data element to ensure appropriate access and data privacy. We introduce the concept of derived data elements to assist the data element standards communities on how they might be best categorised. We introduce the second generation RDRF that

Second generation registry framework

PubMed Central

2014-01-01

Background Information management systems are essential to capture data be it for public health and human disease, sustainable agriculture, or plant and animal biosecurity. In public health, the term patient registry is often used to describe information management systems that are used to record and track phenotypic data of patients. Appropriate design, implementation and deployment of patient registries enables rapid decision making and ongoing data mining ultimately leading to improved patient outcomes. A major bottleneck encountered is the static nature of these registries. That is, software developers are required to work with stakeholders to determine requirements, design the system, implement the required data fields and functionality for each patient registry. Additionally, software developer time is required for ongoing maintenance and customisation. It is desirable to deploy a sophisticated registry framework that can allow scientists and registry curators possessing standard computing skills to dynamically construct a complete patient registry from scratch and customise it for their specific needs with little or no need to engage a software developer at any stage. Results This paper introduces our second generation open source registry framework which builds on our previous rare disease registry framework (RDRF). This second generation RDRF is a new approach as it empowers registry administrators to construct one or more patient registries without software developer effort. New data elements for a diverse range of phenotypic and genotypic measurements can be defined at any time. Defined data elements can then be utilised in any of the created registries. Fine grained, multi-level user and workgroup access can be applied to each data element to ensure appropriate access and data privacy. We introduce the concept of derived data elements to assist the data element standards communities on how they might be best categorised. Conclusions We introduce the

JBEI Registry

DOE Office of Scientific and Technical Information (OSTI.GOV)

Ham, Timothy

2008-12-01

The JBEI Registry is a software to store and manage to a database of biological parts. It is intended to be used as a web service that is accessed via a web browser. It is also capable of running as a desktop program for a single user. The registry software stores, indexes, categories, and allows users to enter, search, retrieve, and contruct biological constructs in silico. It is also able to communicate with other Registries for data sharing and exchange.

Astronomy in New Zealand

NASA Astrophysics Data System (ADS)

Hearnshaw, John B.

2006-01-01

Although New Zealand is a young country, astronomy played a significant role in its early exploration and discovery during the three voyages of Cook from 1769. In the later 19th century several expeditions came to New Zealand to observe the transits of Venus of 1874 and 1882 and New Zealand's rich history of prominent amateur astronomers dates from this time. The Royal Astronomical Society of New Zealand (founded in 1920) has catered for the amateur community. Professional astronomy however had a slow start in New Zealand. The Carter Observatory was founded in 1941. But it was not until astronomy was taken up by New Zealand's universities, notably by the University of Canterbury from 1963, that a firm basis for research in astronomy and astrophysics was established. Mt John University Observatory with its four optical telescopes (largest 1.8 m) is operated by the University of Canterbury and is the main base for observational astronomy in the country. However four other New Zealand universities also have an interest in astronomical research at the present time. There is also considerable involvement in large international projects such as MOA, SALT, AMOR, IceCube and possibly SKA.

Linked Registries: Connecting Rare Diseases Patient Registries through a Semantic Web Layer

PubMed Central

González-Castro, Lorena; Carta, Claudio; van der Horst, Eelke; Lopes, Pedro; Kaliyaperumal, Rajaram; Thompson, Mark; Thompson, Rachel; Queralt-Rosinach, Núria; Lopez, Estrella; Wood, Libby; Robertson, Agata; Lamanna, Claudia; Gilling, Mette; Orth, Michael; Merino-Martinez, Roxana; Taruscio, Domenica; Lochmüller, Hanns

2017-01-01

Patient registries are an essential tool to increase current knowledge regarding rare diseases. Understanding these data is a vital step to improve patient treatments and to create the most adequate tools for personalized medicine. However, the growing number of disease-specific patient registries brings also new technical challenges. Usually, these systems are developed as closed data silos, with independent formats and models, lacking comprehensive mechanisms to enable data sharing. To tackle these challenges, we developed a Semantic Web based solution that allows connecting distributed and heterogeneous registries, enabling the federation of knowledge between multiple independent environments. This semantic layer creates a holistic view over a set of anonymised registries, supporting semantic data representation, integrated access, and querying. The implemented system gave us the opportunity to answer challenging questions across disperse rare disease patient registries. The interconnection between those registries using Semantic Web technologies benefits our final solution in a way that we can query single or multiple instances according to our needs. The outcome is a unique semantic layer, connecting miscellaneous registries and delivering a lightweight holistic perspective over the wealth of knowledge stemming from linked rare disease patient registries. PMID:29214177

Linked Registries: Connecting Rare Diseases Patient Registries through a Semantic Web Layer.

PubMed

Sernadela, Pedro; González-Castro, Lorena; Carta, Claudio; van der Horst, Eelke; Lopes, Pedro; Kaliyaperumal, Rajaram; Thompson, Mark; Thompson, Rachel; Queralt-Rosinach, Núria; Lopez, Estrella; Wood, Libby; Robertson, Agata; Lamanna, Claudia; Gilling, Mette; Orth, Michael; Merino-Martinez, Roxana; Posada, Manuel; Taruscio, Domenica; Lochmüller, Hanns; Robinson, Peter; Roos, Marco; Oliveira, José Luís

2017-01-01

Patient registries are an essential tool to increase current knowledge regarding rare diseases. Understanding these data is a vital step to improve patient treatments and to create the most adequate tools for personalized medicine. However, the growing number of disease-specific patient registries brings also new technical challenges. Usually, these systems are developed as closed data silos, with independent formats and models, lacking comprehensive mechanisms to enable data sharing. To tackle these challenges, we developed a Semantic Web based solution that allows connecting distributed and heterogeneous registries, enabling the federation of knowledge between multiple independent environments. This semantic layer creates a holistic view over a set of anonymised registries, supporting semantic data representation, integrated access, and querying. The implemented system gave us the opportunity to answer challenging questions across disperse rare disease patient registries. The interconnection between those registries using Semantic Web technologies benefits our final solution in a way that we can query single or multiple instances according to our needs. The outcome is a unique semantic layer, connecting miscellaneous registries and delivering a lightweight holistic perspective over the wealth of knowledge stemming from linked rare disease patient registries.

Pregnancy Registries

MedlinePlus

... is compared with women who have not taken medicine during pregnancy. Enrolling in a pregnancy exposure registry can help ... help. Pregnant Women Health Professionals Find a Registry Medicine and Pregnancy More in Women's Health Research OWH Research and ...

The cardiac sonography workforce in New Zealand.

PubMed

Buckley, Belinda; White, Steve; Poppe, Katrina; Whalley, Gillian

2013-05-01

Introduction : The aim of this paper is to investigate the cardiac sonography workforce characteristics and registration requirements in New Zealand (NZ), with a comparison to similar workforces internationally. Methods : The Survey of Clinical Echocardiography in New Zealand 2 (SCANZ2) audit was performed in December 2010. All of NZ's public-funded District Health Board (DHB) centers providing echocardiography services responded to questions relating to staff, equipment, procedure types and patient statistics. The Medical Radiation Technologists Board (MRTB), Clinical Physiologists Registration Board (CPRB) and Australian Sonographers Association Registry (ASAR) websites were reviewed in March 2012 for registered sonographers with a cardiac scope of practice. The cardiac sonography workforces in Australia, the UK, the USA and Canada were investigated for comparison. Results : There are 84 cardiac sonographers (60.3 full-time equivalent) working in DHBs: 71% from a cardiac technical background; 40% have post-graduate qualifications; a further 17% are undertaking post-graduate qualifications; and 59 cardiac sonographers have registration with professional bodies in NZ and/or Australia. Cardiac sonographers in NZ do not undergo compulsory registration, but other sonographers in NZ have compulsory registration with the MRTB. Sonographers are predominantly not licensed internationally. Discussion : Disparity exists between registration of cardiac and non-cardiac sonographers in NZ. Many cardiac sonographers have voluntary registration but few are registered with the MRTB. Reasons for this include professional alignment, educational qualifications and representation. International trends show increased pressure from governments and professional bodies to regulate sonographers. Conclusion : This study provides a snapshot of the cardiac sonography workforce in NZ for the first time.

The cardiac sonography workforce in New Zealand

PubMed Central

White, Steve; Poppe, Katrina; Whalley, Gillian

2015-01-01

Abstract Introduction: The aim of this paper is to investigate the cardiac sonography workforce characteristics and registration requirements in New Zealand (NZ), with a comparison to similar workforces internationally. Methods: The Survey of Clinical Echocardiography in New Zealand 2 (SCANZ2) audit was performed in December 2010. All of NZ's public‐funded District Health Board (DHB) centers providing echocardiography services responded to questions relating to staff, equipment, procedure types and patient statistics. The Medical Radiation Technologists Board (MRTB), Clinical Physiologists Registration Board (CPRB) and Australian Sonographers Association Registry (ASAR) websites were reviewed in March 2012 for registered sonographers with a cardiac scope of practice. The cardiac sonography workforces in Australia, the UK, the USA and Canada were investigated for comparison. Results: There are 84 cardiac sonographers (60.3 full‐time equivalent) working in DHBs: 71% from a cardiac technical background; 40% have post‐graduate qualifications; a further 17% are undertaking post‐graduate qualifications; and 59 cardiac sonographers have registration with professional bodies in NZ and/or Australia. Cardiac sonographers in NZ do not undergo compulsory registration, but other sonographers in NZ have compulsory registration with the MRTB. Sonographers are predominantly not licensed internationally. Discussion: Disparity exists between registration of cardiac and non‐cardiac sonographers in NZ. Many cardiac sonographers have voluntary registration but few are registered with the MRTB. Reasons for this include professional alignment, educational qualifications and representation. International trends show increased pressure from governments and professional bodies to regulate sonographers. Conclusion: This study provides a snapshot of the cardiac sonography workforce in NZ for the first time. PMID:28191178

The burden of cancer in 25-29 year olds in New Zealand: a case for a wider adolescent and young adult age range?

PubMed

Ballantine, Kirsten R; Utley, Victoria; Watson, Heidi; Sullivan, Michael J; Spearing, Ruth

2018-01-19

New Zealand currently defines the adolescent and young adult (AYA) group for cancer services as young people 12-24 years of age, while other countries favour a designation of 15-29 years. This study was undertaken to compare cancer incidence and survival among 25-29 year olds to New Zealand's younger AYA population and to assess survival for our 15-29 year population against international benchmarks. Diagnostic and demographic information for cancer registrations between 2000 and 2009 for 25-29 year olds was obtained from the New Zealand Cancer Registry. Incidence rates (IR) and five-year relative survival estimates were calculated according to AYA diagnostic group/sub-group, sex and prioritised ethnicity. 1,541 new primary malignant cancers were diagnosed (IR: 588 per million). Five-year relative survival was 85%, but was significantly lower for Māori and Pacific peoples (both 77%) compared to non-Māori/non-Pacific peoples (88%). In the overall 15-29 year AYA cohort, disease-specific outcomes for bone tumours (46%) and breast cancer (64%) were inferior to international standards. New Zealand 25 to 29 year olds are at twice the risk of developing cancer as those 15-24 years. Given that the survival disparities identified were remarkably consistent with those for younger AYA, consideration should be given widening New Zealand's AYA age range.

Clinical Trials in Dentistry: A Cross-sectional Analysis of World Health Organization-International Clinical Trial Registry Platform.

PubMed

Sivaramakrishnan, Gowri; Sridharan, Kannan

2016-06-01

Clinical trials are the back bone for evidence-based practice (EBP) and recently EBP has been considered the best source of treatment strategies available. Clinical trial registries serve as databases of clinical trials. As regards to dentistry in specific data on the number of clinical trials and their quality is lacking. Hence, the present study was envisaged. Clinical trials registered in WHO-ICTRP (http://apps.who.int/trialsearch/AdvSearch.aspx) in dental specialties were considered. The details assessed from the collected trials include: Type of sponsors; Health condition; Recruitment status; Study design; randomization, method of randomization and allocation concealment; Single or multi-centric; Retrospective or prospective registration; and Publication status in case of completed studies. A total of 197 trials were identified. Maximum trials were from United States (n = 30) and United Kingdom (n = 38). Seventy six trials were registered in Clinical Trials.gov, 54 from International Standards of Reporting Clinical Trials, 13 each from Australia and New Zealand Trial Register and Iranian Registry of Clinical Trials, 10 from German Clinical Trial Registry, eight each from Brazilian Clinical Trial Registry and Nederland's Trial Register, seven from Japan Clinical Trial Registry, six from Clinical Trial Registry of India and two from Hong Kong Clinical Trial Registry. A total of 78.7% studies were investigator-initiated and 64% were completed while 3% were terminated. Nearly four-fifths of the registered trials (81.7%) were interventional studies of which randomized were the large majority (94.4%) with 63.2% being open label, 20.4% using single blinding technique and 16.4% were doubled blinded. The number, methodology and the characteristics of clinical trials in dentistry have been noted to be poor especially in terms of being conducted multi-centrically, employing blinding and the method for randomization and allocation concealment. More emphasis has to be

Cancer registries in Japan: National Clinical Database and site-specific cancer registries.

PubMed

Anazawa, Takayuki; Miyata, Hiroaki; Gotoh, Mitsukazu

2015-02-01

The cancer registry is an essential part of any rational program of evidence-based cancer control. The cancer control program is required to strategize in a systematic and impartial manner and efficiently utilize limited resources. In Japan, the National Clinical Database (NCD) was launched in 2010. It is a nationwide prospective registry linked to various types of board certification systems regarding surgery. The NCD is a nationally validated database using web-based data collection software; it is risk adjusted and outcome based to improve the quality of surgical care. The NCD generalizes site-specific cancer registries by taking advantage of their excellent organizing ability. Some site-specific cancer registries, including pancreatic, breast, and liver cancer registries have already been combined with the NCD. Cooperation between the NCD and site-specific cancer registries can establish a valuable platform to develop a cancer care plan in Japan. Furthermore, the prognosis information of cancer patients arranged using population-based and hospital-based cancer registries can help in efficient data accumulation on the NCD. International collaboration between Japan and the USA has recently started and is expected to provide global benchmarking and to allow a valuable comparison of cancer treatment practices between countries using nationwide cancer registries in the future. Clinical research and evidence-based policy recommendation based on accurate data from the nationwide database may positively impact the public.

Adding value to clinical trial registries: insights from Australian Cancer Trials Online, a website for consumers.

PubMed

Dear, Rachel; Barratt, Alexandra; Askie, Lisa; McGeechan, Kevin; Arora, Sheena; Crossing, Sally; Currow, David; Tattersall, Martin

2011-02-01

Clinical trials registries are now operating in the USA, Europe, Australia, China, and India and more are planned. Trial registries could be an excellent source of information about clinical trials for patients and others affected by cancer as well as health care professionals, but may be difficult for patients to navigate and use. An opportunity arose in Australia to develop a consumer friendly cancer clinical trials website (Australian Cancer Trials Online (ACTO), www.australiancancertrials.gov.au) using an automated data feed from two large clinical trial registries. In this article, we describe aspects of this new website, and explore ways in which such a website may add value to clinical trial data which are already collected and held by trial registries. The development of ACTO was completed by a Web company working in close association with staff at the Australian New Zealand Clinical Trials Registry (ANZCTR), and with consumer representatives. Data for the website were sourced directly and only from clinical trial registries, thus avoiding the creation of an additional trials database. It receives an automated, daily data feed of newly registered cancer clinical trials from both the ANZCTR and Clinical Trials.gov. The development of ACTO exemplifies the advantage of a local clinical trial registry working with consumers to provide accessible information about cancer clinical trials to meet consumers' information needs. We found that the inclusion of a lay summary added substantial value for consumers, and recommend that consideration be given to adding a lay summary to the mandatory data items collected by all trial registries. Furthermore, improved navigation, decision support tools, and consistency in data collection between clinical trial registries will also enable consumer websites to provide additional value for users. Clinical trial registration is not compulsory in Australia. If the additional cancer items (including a lay summary) are not provided

Improving Interoperability between Registries and EHRs

PubMed Central

Blumenthal, Seth

2018-01-01

National performance measurement needs clinical data that track the performance of multi disciplinary teams across episodes of care. Clinical registries are ideal platforms for this work due to their capture of structured, specific data across specialties. Because registries collect data at a national level, and registry data are captured in a consistent structure and format within each registry, registry data are useful for measurement and analysis “out of the box”. Registry business models are hampered by the cost of collecting data from EHRs and other source systems and abstracting or mapping them to fit registry data models. The National Quality Registry Network (NQRN) has launched Registries on FHIR, an initiative to lower barriers to achieving semantic interoperability between registries and source data systems. In 2017 Registries on FHIR conducted an information gathering campaign to learn where registries want better interoperability, and how to go about improving it. PMID:29888033

Survivorship of Total Hip Joint Replacements Following Isolated Liner Exchange for Wear.

PubMed

Vadei, Leone; Kieser, David C; Frampton, Chris; Hooper, Gary

2017-11-01

Liner exchange for articular component wear in total hip joint replacements (THJRs) is a common procedure, often thought to be benign with reliable outcomes. Recent studies, however, suggest high failure rates of liner exchange revisions with significant complications. The primary aim of this study was, therefore, to analyze the survivorship of isolated liner exchange for articular component wear, and secondarily to assess the influence of patient demographics (gender, age, and American Society of Anaesthesiologists [ASA] ratings) on rerevisions following isolated liner exchange for wear. A retrospective review of the 15-year New Zealand Joint Registry (1999-2014) was performed, analyzing the outcomes of isolated liner exchange for articular component wear. The survivorship as defined as rerevision with component exchange was determined and 10-year Kaplan-Meier survivorship curves were constructed. These revision rates were compared to age, gender, and ASA rating groups using a log-rank test. The 10-year survivorship of THJR following liner exchange revision for liner wear was 75.3%. If a rerevision was required, the median time to rerevision was 1.33 years with a rerevision rate of 3.33 per 100 component years (95% confidence interval 2.68-4.08/100 component years). The principle reasons for rerevision were dislocation (48.4%) and acetabular component loosening (20.9%). There was no statistically significant difference in rerevision rates based on gender, age categories, or ASA scores. THJR isolated liner exchange for liner wear is not a benign procedure with a survivorship of 75.3% at 10 years. Surgeons contemplating liner exchange revisions should be cognisant of this risk and should adequately assess component position and stability preoperatively. Copyright © 2017 Elsevier Inc. All rights reserved.

Prophylaxis usage, bleeding rates, and joint outcomes of hemophilia, 1999 to 2010: a surveillance project

PubMed Central

Soucie, J. Michael; Gill, Joan Cox

2017-01-01

This analysis of the US Hemophilia Treatment Center Network and the Centers for Disease Control and Prevention surveillance registry assessed trends in prophylaxis use and its impact on key indicators of arthropathy across the life-span among participants with severe hemophilia A. Data on demographics, clinical characteristics, and outcomes were collected prospectively between 1999 and 2010 at annual clinical visits to 134 hemophilia treatment centers. Trends in treatment and outcomes were evaluated using cross-sectional and longitudinal analyses. Data analyzed included 26 614 visits for 6196 males; mean age at first registry visit was 17.7 years; and median was 14 (range, 2 to 69). During this time, prophylaxis use increased from 31% to 59% overall, and by 2010, 75% of children and youths <20 years were on prophylaxis. On cross-sectional analysis, bleeding rates decreased dramatically for the entire population (P < .001) in parallel with increased prophylaxis usage, possibly because frequent bleeders adopted prophylaxis. Joint bleeding decreased proportionately with prophylaxis (22%) and nonprophylaxis (23%), and target joints decreased more with prophylaxis (80% vs 61%). Joint, total, and target joint bleeding on prophylaxis were 33%, 41%, and 27%, respectively, compared with nonprophylaxis. On longitudinal analysis of individuals over time, prophylaxis predicted decreased bleeding at any age (P < .001), but only prophylaxis initiation prior to age 4 years and nonobesity predicted preservation of joint motion (P < .001 for each). Using a national registry, care providers in a specialized health care network for a rare disorder were able to detect and track trends in outcomes over time. PMID:28183693

Workload and time management in central cancer registries: baseline data and implication for registry staffing.

PubMed

Chapman, Susan A; Mulvihill, Linda; Herrera, Carolina

2012-01-01

The Workload and Time Management Survey of Central Cancer Registries was conducted in 2011 to assess the amount of time spent on work activities usually performed by cancer registrars. A survey including 39 multi-item questions,together with a work activities data collection log, was sent by email to the central cancer registry (CCR) manager in each of the 50 states and the District of Columbia. Twenty-four central cancer registries (47%) responded to the survey.Results indicate that registries faced reductions in budgeted staffing from 2008-2009. The number of source records and total cases were important indicators of workload. Four core activities, including abstracting at the registry, visual editing,case consolidation, and resolving edit reports, accounted for about half of registry workload. We estimate an average of 12.4 full-time equivalents (FTEs) are required to perform all cancer registration activities tracked by the survey; however,estimates vary widely by registry size. These findings may be useful for registries as a benchmark for their own registry workload and time-management data and to develop staffing guidelines.

Workload and Time Management in Central Cancer Registries: Baseline Data and Implication for Registry Staffing

PubMed Central

Chapman, Susan A.; Mulvihill, Linda; Herrera, Carolina

2015-01-01

The Workload and Time Management Survey of Central Cancer Registries was conducted in 2011 to assess the amount of time spent on work activities usually performed by cancer registrars. A survey including 39 multi-item questions, together with a work activities data collection log, was sent by email to the central cancer registry (CCR) manager in each of the 50 states and the District of Columbia. Twenty-four central cancer registries (47%) responded to the survey. Results indicate that registries faced reductions in budgeted staffing from 2008–2009. The number of source records and total cases were important indicators of workload. Four core activities, including abstracting at the registry, visual editing, case consolidation, and resolving edit reports, accounted for about half of registry workload. We estimate an average of 12.4 full-time equivalents (FTEs) are required to perform all cancer registration activities tracked by the survey; however, estimates vary widely by registry size. These findings may be useful for registries as a benchmark for their own registry workload and time-management data and to develop staffing guidelines. PMID:23493024

Experimental cryo-irrigation of the knee joint.

PubMed

Chen, S C; Helal, B; Revell, P A; Brocklehurst, R; Currey, H L

1986-10-01

Experiments have been carried out to test the feasibility of using cryo-irrigation as a means of ablating the synovium in the rheumatoid knee joint. Cryo-irrigation was performed by a cooling machine and pump, which circulated cold 200/10 centistoke (cSt) silicone through the knee joint of rabbits anaesthetised with intravenous (IV) 'Saffan'. Fluid left the joint at -5 to -10 degrees C. Sixteen normal New Zealand rabbits received cryo-irrigation of one knee joint for 10-20 minutes and were killed at one day, and one, two, and 12 weeks thereafter. Judged by radioactive sulphate incorporation there was no impairment of chondrocyte function in the articular cartilage of irrigated joints. Histological examination showed mild synovitis and some loss of staining of superficial cartilage in 6/16 irrigated joints (v 1/16 control joints). Similar treatment of rabbit joints in which the Glynn model of synovitis had been induced showed marked reduction of synovitis 14-45 days after silicone treatment. Nine of 26 animals in which synovitis was induced in both knees and cryo-irrigation performed in one knee died either immediately postoperatively or during the next week. These deaths remain unexplained. A single dog received cryo-irrigation of one knee (-6 to -9 degrees C for 22 min) and remained perfectly well up to sacrifice at six months, when the joint appeared histologically completely normal.

Developing a caries risk registry to support caries risk assessment and management for children: A quality improvement initiative.

PubMed

Ruff, Jesley C; Herndon, Jill Boylston; Horton, Roger A; Lynch, Julie; Mathwig, Dawn C; Leonard, Audra; Aravamudhan, Krishna

2017-10-27

Health registries are commonly used in medicine to support public health activities and are increasingly used in quality improvement (QI) initiatives. Illustrations of dental registries and their QI applications are lacking. Within dentistry, caries risk assessment implementation and documentation are vital to optimal patient care. The purpose of this article is to describe the processes used to develop a caries risk assessment registry as a QI initiative to support clinical caries risk assessment, caries prevention, and disease management for children. Developmental steps reflected Agency for Healthcare Research and Quality recommendations for planning QI registries and included engaging "champions," defining the project, identifying registry features, defining performance dashboard indicators, and pilot testing with participant feedback. We followed Standards for Quality Improvement Reporting Excellence guidelines. Registry eligibility is patients aged 0-17 years. QI tools include prompts to register eligible patients; decision support tools grounded in evidence-based guidelines; and performance dashboard reports delivered at the provider and aggregated levels at regular intervals. The registry was successfully piloted in two practices with documented caries risk assessment increasing from 57 percent to 92 percent and positive feedback regarding the potential to improve dental practice patient centeredness, patient engagement and education, and quality of care. The caries risk assessment registry demonstrates how dental registries may be used in QI efforts to promote joint patient and provider engagement, foster shared decision making, and systematically collect patient information to generate timely and actionable data to improve care quality and patient outcomes at the individual and population levels. © 2017 American Association of Public Health Dentistry.

Review of patient registries in dermatology.

PubMed

DiMarco, Gabriella; Hill, Dane; Feldman, Steven R

2016-10-01

Patient registries are datasets containing information on patients with a particular disease or patients who are undergoing a specific treatment. Our objective was to search for and catalog the types of registries being used in dermatology and investigate their characteristics and uses. We searched Google, the Registry of Patient Registries, Orphanet, and ClinicalTrials.gov to compile a list of dermatology disease registries. We also conducted a literature review on the uses of dermatology registries using PubMed. We identified 48 dermatology patient registries, with 23 distinct diseases represented. We also identified 11 registries used for postmarketing surveillance of skin disease. Our search was limited to registries in English. Registries are commonly used for the study of rare dermatologic diseases and for postsurveillance monitoring of systemic therapies in more common dermatologic diseases, such as psoriasis. Copyright © 2016 American Academy of Dermatology, Inc. Published by Elsevier Inc. All rights reserved.

The burden of non-melanoma skin cancers in Auckland, New Zealand.

PubMed

Pondicherry, Ashwini; Martin, Richard; Meredith, Ineke; Rolfe, Jack; Emanuel, Patrick; Elwood, Mark

2018-01-19

As the New Zealand Cancer Registry does not require mandatory reporting of non-melanoma skin cancers (NMSC), basal cell carcinomas (BCC) and squamous cell carcinomas (SCC), the clinical burden of these diseases is unknown. A retrospective review of all patients with histopathology performed allowed us to estimate invasive BCC and SCC in the Auckland region in 2008 (population 1.44 million). During this period, a total of 21 236 NMSC were diagnosed among 13 996 patients, consisting of 5611 SCC lesions (26%) and 15 525 (74%) BCC. The Auckland incidence rates per 100 000 were 425 for SCC and 1177 for BCC. The overall rate of NMSC per 100 000 was 1906.5 (standardised to the census data of Australia 2001); 1385 for BCC and 522 for SCC. Using published data on incidence trends and population growth, we estimate that 29 000-33 000 NMSC would have been excised in Auckland in 2016, and 78 000-87 000 in New Zealand. Auckland has the highest reported incidence of invasive NMSC in the world. We believe that high-risk cutaneous SCC and complex BCC should be recorded. Our study provides information for clinicians and health economists on the scale of the problem. © 2018 The Australasian College of Dermatologists.

The effect of mindfulness training prior to total joint arthroplasty on post-operative pain and physical function: study protocol for a randomised controlled trial.

PubMed

Dowsey, Michelle M; Castle, David J; Knowles, Simon R; Monshat, Kaveh; Salzberg, Michael R; Choong, Peter F M

2014-06-05

be applied to estimate the potential cost-effectiveness of mindfulness training and total joint arthroplasty. Australian New Zealand Clinical Trials Registry (ANZCTRN12611001184965). Date of registration; 15th November 2011.

The utility of heart failure registries: a descriptive and comparative study of two heart failure registries.

PubMed

Trullàs, Joan Carles; Miró, Òscar; Formiga, Francesc; Martín-Sánchez, Francisco Javier; Montero-Pérez-Barquero, Manuel; Jacob, Javier; Quirós-López, Raúl; Herrero Puente, Pablo; Manzano, Luís; Llorens, Pere

2016-05-01

Registries are useful to address questions that are difficult to answer in clinical trials. The objective of this study was to describe and compare two heart failure (HF) cohorts from two Spanish HF registries. We compared the RICA and EAHFE registries, both of which are prospective multicentre cohort studies including patients with decompensated HF consecutively admitted to internal medicine wards (RICA) or attending the emergency department (EAHFE). From the latter registry we only included patients who were admitted to internal medicine wards. A total of 5137 patients admitted to internal medicine wards were analysed (RICA: 3287 patients; EAHFE: 1850 patients). Both registries included elderly patients (RICA: mean (SD) age 79 (9) years; EAHFE: mean (SD) age 81 (9) years), with a slight predominance of female gender (52% and 58%, respectively, in the RICA and EAHFE registries) and with a high proportion of patients with preserved ejection fraction (58% and 62%, respectively). Some differences in comorbidities were noted, with diabetes mellitus, dyslipidaemia, chronic renal failure and atrial fibrillation being more frequent in the RICA registry while cognitive and functional impairment predominated in the EAHFE registry. The 30-day mortality after discharge was 3.4% in the RICA registry and 4.8% in the EAHFE registry (p<0.05) and the 30-day readmission rate was 7.5% in the RICA registry (readmission to hospital) and 24.0% in the EAHFE registry (readmission to emergency department) (p<0.001). We found differences in the clinical characteristics of patients admitted to Spanish internal medicine wards for decompensated HF depending on inclusion in either the RICA or EAHFE registry. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

A web-based, patient driven registry for Angelman syndrome: the global Angelman syndrome registry.

PubMed

Napier, Kathryn R; Tones, Megan; Simons, Chloe; Heussler, Helen; Hunter, Adam A; Cross, Meagan; Bellgard, Matthew I

2017-08-01

Angelman syndrome (AS) is a rare neurodevelopmental disorder that is characterised by severe global developmental delays, ataxia, loss of speech, epilepsy, sleep disorders, and a happy disposition. There is currently no cure for AS, though several pharmaceutical companies are anticipating drug trials for new therapies to treat AS. The Foundation for Angelman Therapeutics (FAST) Australia therefore identified a need for a global AS patient registry to identify patients for recruitment for clinical trials.The Global AS Registry was deployed in September 2016 utilising the Rare Disease Registry Framework, an open-source tool that enables the efficient creation and management of patient registries. The Global AS Registry is web-based and allows parents and guardians worldwide to register, provide informed consent, and enter data on individuals with AS. 286 patients have registered in the first 8 months since deployment.We demonstrate the successful deployment of the first patient-driven global registry for AS. The data generated from the Global AS Registry will be crucial in identifying patients suitable for clinical trials and in informing research that will identify treatments for AS, and ultimately improve the lives of individuals and their families living with AS.

Cancer incidence in indigenous people in Australia, New Zealand, Canada, and the USA: a comparative population-based study.

PubMed

Moore, Suzanne P; Antoni, Sébastien; Colquhoun, Amy; Healy, Bonnie; Ellison-Loschmann, Lis; Potter, John D; Garvey, Gail; Bray, Freddie

2015-11-01

Indigenous people have disproportionally worse health and lower life expectancy than their non-indigenous counterparts in high-income countries. Cancer data for indigenous people are scarce and incidence has not previously been collectively reported in Australia, New Zealand, Canada, and the USA. We aimed to investigate and compare, for the first time, the cancer burden in indigenous populations in these countries. We derived incidence data from population-based cancer registries in three states of Australia (Queensland, Western Australia, and the Northern Territory), New Zealand, the province of Alberta in Canada, and the Contract Health Service Delivery Areas of the USA. Summary rates for First Nations and Inuit in Alberta, Canada, were provided directly by Alberta Health Services. We compared age-standardised rates by registry, sex, cancer site, and ethnicity for all incident cancer cases, excluding non-melanoma skin cancers, diagnosed between 2002 and 2006. Standardised rate ratios (SRRs) and 95% CIs were computed to compare the indigenous and non-indigenous populations of each jurisdiction, except for the Alaska Native population, which was compared with the white population from the USA. We included 24 815 cases of cancer in indigenous people and 5 685 264 in non-indigenous people from all jurisdictions, not including Alberta, Canada. The overall cancer burden in indigenous populations was substantially lower in the USA except in Alaska, similar or slightly lower in Australia and Canada, and higher in New Zealand compared with their non-indigenous counterparts. Among the most commonly occurring cancers in indigenous men were lung, prostate, and colorectal cancer. In most jurisdictions, breast cancer was the most common cancer in women followed by lung and colorectal cancer. The incidence of lung cancer was higher in indigenous men in all Australian regions, in Alberta, and in US Alaska Natives than in their non-indigenous counterparts. For breast cancer

Data Quality in Rare Diseases Registries.

PubMed

Kodra, Yllka; Posada de la Paz, Manuel; Coi, Alessio; Santoro, Michele; Bianchi, Fabrizio; Ahmed, Faisal; Rubinstein, Yaffa R; Weinbach, Jérôme; Taruscio, Domenica

2017-01-01

In the field of rare diseases, registries are considered power tool to develop clinical research, to facilitate the planning of appropriate clinical trials, to improve patient care and healthcare planning. Therefore high quality data of rare diseases registries is considered to be one of the most important element in the establishment and maintenance of a registry. Data quality can be defined as the totality of features and characteristics of data set that bear on its ability to satisfy the needs that result from the intended use of the data. In the context of registries, the 'product' is data, and quality refers to data quality, meaning that the data coming into the registry have been validated, and ready for use for analysis and research. Determining the quality of data is possible through data assessment against a number of dimensions: completeness, validity; coherence and comparability; accessibility; usefulness; timeliness; prevention of duplicate records. Many others factors may influence the quality of a registry: development of standardized Case Report Form and security/safety controls of informatics infrastructure. With the growing number of rare diseases registries being established, there is a need to develop a quality validation process to evaluate the quality of each registry. A clear description of the registry is the first step when assessing data quality or the registry evaluation system. Here we report a template as a guide for helping registry owners to describe their registry.

Meta-analysis of individual registry results enhances international registry collaboration.

PubMed

Paxton, Elizabeth W; Mohaddes, Maziar; Laaksonen, Inari; Lorimer, Michelle; Graves, Stephen E; Malchau, Henrik; Namba, Robert S; Kärrholm, John; Rolfson, Ola; Cafri, Guy

2018-03-28

Background and purpose - Although common in medical research, meta-analysis has not been widely adopted in registry collaborations. A meta-analytic approach in which each registry conducts a standardized analysis on its own data followed by a meta-analysis to calculate a weighted average of the estimates allows collaboration without sharing patient-level data. The value of meta-analysis as an alternative to individual patient data analysis is illustrated in this study by comparing the risk of revision of porous tantalum cups versus other uncemented cups in primary total hip arthroplasties from Sweden, Australia, and a US registry (2003-2015). Patients and methods - For both individual patient data analysis and meta-analysis approaches a Cox proportional hazard model was fit for time to revision, comparing porous tantalum (n = 23,201) with other uncemented cups (n = 128,321). Covariates included age, sex, diagnosis, head size, and stem fixation. In the meta-analysis approach, treatment effect size (i.e., Cox model hazard ratio) was calculated within each registry and a weighted average for the individual registries' estimates was calculated. Results - Patient-level data analysis and meta-analytic approaches yielded the same results with the porous tantalum cups having a higher risk of revision than other uncemented cups (HR (95% CI) 1.6 (1.4-1.7) and HR (95% CI) 1.5 (1.4-1.7), respectively). Adding the US cohort to the meta-analysis led to greater generalizability, increased precision of the treatment effect, and similar findings (HR (95% CI) 1.6 (1.4-1.7)) with increased risk of porous tantalum cups. Interpretation - The meta-analytic technique is a viable option to address privacy, security, and data ownership concerns allowing more expansive registry collaboration, greater generalizability, and increased precision of treatment effects.

[Clinical trials registry].

PubMed

Ryder, Elena

2004-12-01

Authors and journals are more enthusiastic about the publication of trials with positive results than those negative or inconclusive trials. The International Committee of Medical Journal Editors proposed comprehensive trials registration as a solution to the problem of selective awareness and announces that the ICMJE member journals will adopt a trial-registration policy to promote this goal. They establish as a condition of consideration for publication, registration in a public trials registry. They recommend registries that meet certain criteria as www.clinicaltrials.com. Among those criteria is that the registry must be supported by a non-profit organization. On the other hand, people from Current Controlled Trials Ltd. being a commercial company, but meeting all the other criteria established by the ICMJE, feel that is being put aside. We wonder if clinical trials in our country are being registered in some of these International Registries. If not, would it be time to do so?

eRegistries: governance for electronic maternal and child health registries.

PubMed

Myhre, Sonja L; Kaye, Jane; Bygrave, Lee A; Aanestad, Margunn; Ghanem, Buthaina; Mechael, Patricia; Frøen, J Frederik

2016-09-23

The limited availability of maternal and child health data has limited progress in reducing mortality and morbidity among pregnant women and children. Global health agencies, leaders, and funders are prioritizing strategies that focus on acquiring high quality health data. Electronic maternal and child health registries (eRegistries) offer a systematic data collection and management approach that can serve as an entry point for preventive, curative and promotive health services. Due to the highly sensitive nature of reproductive health information, careful consideration must be accorded to privacy, access, and data security. In the third paper of the eRegistries Series, we report on the current landscape of ethical and legal governance for maternal and child health registries in developing countries. This research utilizes findings from two web-based surveys, completed in 2015 that targeted public health officials and health care providers in 76 countries with high global maternal and child mortality burden. A sample of 298 public health officials from 64 countries and 490 health care providers from 59 countries completed the online survey. Based on formative research in the development of the eRegistries Governance Guidance Toolkit, the surveys were designed to investigate topics related to maternal and child health registries including ethical and legal issues. According to survey respondents, the prevailing legal landscape is characterized by inadequate data security safeguards and weak support for core privacy principles. Respondents from the majority of countries indicated that health information from medical records is typically protected by legislation although legislation dealing specifically or comprehensively with data privacy may not be in place. Health care provider trust in the privacy of health data at their own facilities is associated with the presence of security safeguards. Addressing legal requirements and ensuring that privacy and data security

External validation of the diffuse intrinsic pontine glioma survival prediction model: a collaborative report from the International DIPG Registry and the SIOPE DIPG Registry.

PubMed

Veldhuijzen van Zanten, Sophie E M; Lane, Adam; Heymans, Martijn W; Baugh, Joshua; Chaney, Brooklyn; Hoffman, Lindsey M; Doughman, Renee; Jansen, Marc H A; Sanchez, Esther; Vandertop, William P; Kaspers, Gertjan J L; van Vuurden, Dannis G; Fouladi, Maryam; Jones, Blaise V; Leach, James

2017-08-01

We aimed to perform external validation of the recently developed survival prediction model for diffuse intrinsic pontine glioma (DIPG), and discuss its utility. The DIPG survival prediction model was developed in a cohort of patients from the Netherlands, United Kingdom and Germany, registered in the SIOPE DIPG Registry, and includes age <3 years, longer symptom duration and receipt of chemotherapy as favorable predictors, and presence of ring-enhancement on MRI as unfavorable predictor. Model performance was evaluated by analyzing the discrimination and calibration abilities. External validation was performed using an unselected cohort from the International DIPG Registry, including patients from United States, Canada, Australia and New Zealand. Basic comparison with the results of the original study was performed using descriptive statistics, and univariate- and multivariable regression analyses in the validation cohort. External validation was assessed following a variety of analyses described previously. Baseline patient characteristics and results from the regression analyses were largely comparable. Kaplan-Meier curves of the validation cohort reproduced separated groups of standard (n = 39), intermediate (n = 125), and high-risk (n = 78) patients. This discriminative ability was confirmed by similar values for the hazard ratios across these risk groups. The calibration curve in the validation cohort showed a symmetric underestimation of the predicted survival probabilities. In this external validation study, we demonstrate that the DIPG survival prediction model has acceptable cross-cohort calibration and is able to discriminate patients with short, average, and increased survival. We discuss how this clinico-radiological model may serve a useful role in current clinical practice.

Review of U.S. registries for psoriasis.

PubMed

Amin, Mina; No, Daniel J; Wu, Jashin J

2017-12-01

Patient registries are databases comprised of standardized clinical data for a specific population of patients with a particular disease or medical condition. Information from patient registries allows clinicians to assess long-lasting outcomes in patients with a specific disease, such as psoriasis. Our primary objective was to identify available psoriasis registries in the United States (U.S.) and evaluate the application of patient registries compared to clinical trials. We searched Google, the Registry of Patient Registries, Orphanet and ClinicalTrials.gov to create a list of U.S. psoriasis registries. We also performed a literature review on the application of psoriasis registries using PubMed. We identified 6 psoriasis patient registries in the United States. Patient registries are frequently used for psoriasis in the U.S. and provide important information about the safety, efficacy and long-term effects of systemic therapies.

Premature trial discontinuation often not accurately reflected in registries: comparison of registry records with publications.

PubMed

Alturki, Reem; Schandelmaier, Stefan; Olu, Kelechi Kalu; von Niederhäusern, Belinda; Agarwal, Arnav; Frei, Roy; Bhatnagar, Neera; Hooft, Lotty; von Elm, Erik; Briel, Matthias

2017-01-01

One quarter of randomized clinical trials (RCTs) are prematurely discontinued and frequently remain unpublished. Trial registries can document whether a trial is ongoing, suspended, discontinued, or completed and therefore represent an important source for trial status information. The accuracy of this information is unclear. To examine the accuracy of completion status and reasons for discontinuation documented in trial registries as compared to corresponding publications of discontinued RCTs and to investigate potential predictors for accurate trial status information in registries. We conducted a cross-sectional study comparing information provided in publications (reference standard) to corresponding registry entries. First, we reviewed publications of RCTs providing information on both discontinuation and registration. We identified eligible publications through systematic searches of MEDLINE and EMBASE (2010-2014) and an international cohort of 1,017 RCTs initiated between 2000 and 2003. Second, pairs of investigators independently and in duplicate extracted data from publications and corresponding registry records. Third, for each discontinued RCT, we compared publication information to registry information. We used multivariable regression to examine whether accurate labeling of trials as discontinued (vs. other status) in the registry was associated with recent initiation of RCT, industry sponsorship, multicenter design, or larger sample size. We identified 173 publications of RCTs that were discontinued due to slow recruitment (55%), harm (16%), futility (11%), benefit (5%), other reasons (3%), or multiple reasons (9%). Trials were registered with clinicaltrials.gov (77%), isrctn.com (14%), or other registries (8%). Of the 173 corresponding registry records, 77 (45%) trials were labeled as discontinued and 57 (33%) provided a reason for discontinuation (of which 53, 93%, provided the same reason as in the publication). Labeling of discontinued trials as

Systematic Review of Cerebral Palsy Registries/Surveillance Groups: Relationships between Registry Characteristics and Knowledge Dissemination

PubMed Central

Hurley, Donna S; Sukal-Moulton, Theresa; Gaebler-Spira, Deborah; Krosschell, Kristin J; Pavone, Larissa; Mutlu, Akmer; Dewald, Julius PA; Msall, Michael E

2016-01-01

The aims of this study were to provide a comprehensive summary of the body of research disseminated by Cerebral Palsy (CP) registries and surveillance programs from January 2009 through May 2014 in order to describe the influence their results have on our overall understanding of CP. Secondly, registries/surveillance programs and the work they produced were evaluated and grouped using standardized definitions and classification systems. Method A systematic review search in PubMed, CINAH and Embase for original articles published from 1 January 2009 to 20 May 2014 originating from or supported by population based CP registries and surveillance programs or population based national registries including CP were included. Articles were grouped by 2009 World CP Registry Congress aim, registry/surveillance program classification, geographical region, and the International Classification of Function, Disability and Health (ICF) domain. Registry variables were assessed using the ICF-CY classification. Results Literature searches returned 177 articles meeting inclusion criteria. The majority (69%) of registry/surveillance program productivity was related to contributions as a Resource for CP Research. Prevention (23%) and Surveillance (22%) articles were other areas of achievement, but fewer articles were published in the areas of Planning (17%) and Raising the Profile of CP (2%). There was a range of registry/surveillance program classifications contributing to this productivity, and representation from multiple areas of the globe, although most of the articles originated in Europe, Australia, and Canada. The domains of the ICF that were primarily covered included body structures and function at the early stages of life. Encouragingly, a variety of CP registry/surveillance program initiatives included additional ICF domains of participation and environmental and personal factors. Interpretation CP registries and surveillance programs, including novel non-traditional ones

Periprosthetic Joint Infection in Hip Arthroplasty: Is There an Association Between Infection and Bearing Surface Type?

PubMed

Pitto, Rocco P; Sedel, Laurent

2016-10-01

Preliminary studies have raised the question of whether certain prosthetic biomaterials used in total hip arthroplasty (THA) bearings are associated with increased risk of periprosthetic joint infection (PJI). For example, some observational data suggest the risk of PJI is higher with metal-on-metal bearings. However, it is not known whether other bearings-including ceramic bearings or metal-on-polyethylene bearings-may be associated with a higher or lower risk of PJI. The objective of this study was to use a national arthroplasty registry to assess whether the choice of bearings-metal-on-polyethylene (MoP), ceramic-on-polyethylene (CoP), ceramic-on-ceramic (CoC), or metal-on-metal (MoM)-is associated with differences in the risk of revision for deep infection, either (1) within 6 months or (2) over the entire period of observation, which spanned 15 years. Data from primary THAs were extracted from the New Zealand Joint Registry over a 15-year period. A total of 97,889 hips were available for analysis. Inclusion criterion was degenerative joint disease; exclusion criteria were previous surgery, trauma, and any other diagnosis (12,566 hips). We also excluded a small group of ceramic-on-metal THAs (429) with short followup. The median observation period of the selected group of hips (84,894) was 9 years (range, 1-15 years). The mean age of patients was 68 years (SD ± 11 years), and 52% were women. There were 54,409 (64%) MoP, 16,503 (19%) CoP, 9051 (11%) CoC, and 4931 (6%) MoM hip arthroplasties. Four hundred one hips were revised for deep infection. A multivariate assessment was carried out including the following risks factors available for analysis: age, sex, operating room type, use of body exhaust suits, THA fixation mode, and surgeon volume. Because of late introduction of data collection in the Registry, we were unable to include body mass index (BMI, recording started 2010) and medical comorbidities according to the American Society of Anesthesiologists

Small Numbers, Big Challenges: Adolescent and Young Adult Cancer Incidence and Survival in New Zealand.

PubMed

Ballantine, Kirsten R; Watson, Heidi; Macfarlane, Scott; Winstanley, Mark; Corbett, Robin P; Spearing, Ruth; Stevanovic, Vladimir; Yi, Ma; Sullivan, Michael J

2017-06-01

This study was undertaken to determine cancer survival and describe the unique spectrum of cancers diagnosed among New Zealand's adolescents and young adult (AYA) population. Registrations for 1606 15-24 year olds diagnosed with a new primary malignant tumor between 2000 and 2009 were obtained from the New Zealand Cancer Registry and classified according to AYA diagnostic group and subgroup, age, sex, and prioritized ethnicity. Age-standardized incidence rates (IRs) per million person years and 5-year relative survival ratios were calculated. Cancer incidence was 228.6 per million for adolescents aged 15-19 years and 325.7 per million for young adults aged 20-24 years. Overall IRs were consistent across all ethnic groups but there were unique ethnic differences by tumor group including a higher incidence of bone tumors, carcinoma of the gastrointestinal tract, and gonadal germ cell tumors among Maori, a higher incidence of leukemia among Pacific peoples, and a higher incidence of melanoma among non-Maori/non-Pacific peoples. Five-year relative survival for adolescents (75.1%) and AYA overall (80.6%) appeared poorer than had been achieved in other high-income countries. Maori (69.5%) and Pacific (71.3%) AYA had lower 5-year survival compared to non-Maori/non-Pacific peoples (84.2%). The survival disparities observed require further investigation to identify and address the causes of these inferior outcomes. The newly established AYA Cancer Network Aotearoa has been tasked with improving cancer survival and care and ensuring equality of access for New Zealand AYAs with cancer.

Nordic registry-based cohort studies: Possibilities and pitfalls when combining Nordic registry data.

PubMed

Maret-Ouda, John; Tao, Wenjing; Wahlin, Karl; Lagergren, Jesper

2017-07-01

All five Nordic countries (Denmark, Finland, Iceland, Norway and Sweden) have nationwide registries with similar data structure and validity, as well as personal identity numbers enabling linkage between registries. These resources provide opportunities for medical research that is based on large registry-based cohort studies with long and complete follow-up. This review describes practical aspects, opportunities and challenges encountered when setting up all-Nordic registry-based cohort studies. Relevant articles describing registries often used for medical research in the Nordic countries were retrieved. Further, our experiences of conducting this type of study, including planning, acquiring permissions, data retrieval and data cleaning and handling, and the possibilities and challenges we have encountered are described. Combining data from the Nordic countries makes it possible to create large and powerful cohorts. The main challenges include obtaining all permissions within each country, usually in the local language, and retrieving the data. These challenges emphasise the importance of having experienced collaborators within each country. Following the acquisition of data, data management requires the understanding of the differences between the variables to be used in the various countries. A concern is the long time required between initiation and completion. Nationwide Nordic registries can be combined into cohorts with high validity and statistical power, but the considerable expertise, workload and time required to complete such cohorts should not be underestimated.

Implications for registry-based vaccine effectiveness studies from an evaluation of an immunization registry: a cross-sectional study.

PubMed

Mahon, Barbara E; Shea, Kimberly M; Dougherty, Nancy N; Loughlin, Anita M

2008-05-14

Population-based electronic immunization registries create the possibility of using registry data to conduct vaccine effectiveness studies which could have methodological advantages over traditional observational studies. For study validity, the base population would have to be clearly defined and the immunization status of members of the population accurately recorded in the registry. We evaluated a city-wide immunization registry, focusing on its potential as a tool to study pertussis vaccine effectiveness, especially in adolescents. We conducted two evaluations - one in sites that were active registry participants and one in sites that had implemented an electronic medical record with plans for future direct data transfer to the registry - of the ability to match patients' medical records to registry records and the accuracy of immunization records in the registry. For each site, records from current pediatric patients were chosen randomly. Data regarding pertussis-related immunizations, clinic usage, and demographic and identifying information were recorded; for 11-17-year-old subjects, information on MMR, hepatitis B, and varicella immunizations was also collected. Records were then matched, when possible, to registry records. For records with a registry match, immunization data were compared. Among 350 subjects from sites that were current registry users, 307 (87.7%) matched a registry record. Discrepancies in pertussis-related data were common for up-to-date status (22.6%), number of immunizations (34.7%), dates (10.2%), and formulation (34.4%). Among 442 subjects from sites that planned direct electronic transfer of immunization data to the registry, 393 (88.9%) would have matched a registry record; discrepancies occurred frequently in number of immunizations (11.9%), formulation (29.1%), manufacturer (94.4%), and lot number (95.1%.) Inability to match and immunization discrepancies were both more common in subjects who were older at their first visit to

Association Between Delayed Graft Function and Graft Loss in Donation After Cardiac Death Kidney Transplants-A Paired Kidney Registry Analysis.

PubMed

Lim, Wai H; McDonald, Stephen P; Russ, Graeme R; Chapman, Jeremy R; Ma, Maggie Km; Pleass, Henry; Jaques, Bryon; Wong, Germaine

2017-06-01

Delayed graft function (DGF) is an established complication after donation after cardiac death (DCD) kidney transplants, but the impact of DGF on graft outcomes is uncertain. To minimize donor variability and bias, a paired donor kidney analysis was undertaken where 1 kidney developed DGF and the other did not develop DGF using data from the Australia and New Zealand Dialysis and Transplant Registry. Using paired DCD kidney data from the Australia and New Zealand Dialysis and Transplant Registry, we examined the association between DGF, graft and patient outcomes between 1994 and 2012 using adjusted Cox regression models. Of the 74 pairs of DCD kidneys followed for a median of 1.9 years (408 person-years), a greater proportion of recipients with DGF had experienced overall graft loss and death-censored graft loss at 3 years compared with those without DGF (14% vs 4%, P = 0.04 and 11% vs 0%, P < 0.01, respectively). Compared with recipients without DGF, the adjusted hazard ratio for overall graft loss at 3 years for recipients with DGF was 4.31 (95% confidence interval [95% CI], 1.13-16.44). The adjusted hazard ratio for acute rejection and all-cause mortality at 3 years in recipients who have experienced DGF were 0.98 (95% CI, 0.96-1.01) and 1.70 (95% CI, 0.36-7.93), respectively, compared with recipients without DGF. Recipients of DCD kidneys with DGF experienced a higher incidence of overall and death-censored graft loss compared with those without DGF. Strategies aim to reduce the risk of DGF could potentially improve graft survival in DCD kidney transplants.

[Types of medical registries - definitions, methodological aspects and quality of the scientific work with registries].

PubMed

Mathis-Edenhofer, Stefan; Piso, Brigitte

2011-12-01

This work presents a comprehensive list of registry definitions including broader and narrower definitions. Compared to each other different methodological issues can be identified. Some of these issues are common for all registry types; some can be assigned more easily to a specific registry type. Instruments for evaluating the quality of registers reflect many of the mentioned aspects. Generally, and especially at registers with a descriptive or exploratory research dimension it is important to consider their intended purpose and in about it was achieved. This includes, for instance, whether the purpose and the methodology are coordinated. From the start of registration an initiator should be - based on the purpose - aware of the methodological dimension of the registry. This helps to apply the correct type of the registry, the appropriate guidance and, ultimately, the arguments for the effort (cost-benefit ratio).

Implications for registry-based vaccine effectiveness studies from an evaluation of an immunization registry: A cross-sectional study

PubMed Central

Mahon, Barbara E; Shea, Kimberly M; Dougherty, Nancy N; Loughlin, Anita M

2008-01-01

Background Population-based electronic immunization registries create the possibility of using registry data to conduct vaccine effectiveness studies which could have methodological advantages over traditional observational studies. For study validity, the base population would have to be clearly defined and the immunization status of members of the population accurately recorded in the registry. We evaluated a city-wide immunization registry, focusing on its potential as a tool to study pertussis vaccine effectiveness, especially in adolescents. Methods We conducted two evaluations – one in sites that were active registry participants and one in sites that had implemented an electronic medical record with plans for future direct data transfer to the registry – of the ability to match patients' medical records to registry records and the accuracy of immunization records in the registry. For each site, records from current pediatric patients were chosen randomly. Data regarding pertussis-related immunizations, clinic usage, and demographic and identifying information were recorded; for 11–17-year-old subjects, information on MMR, hepatitis B, and varicella immunizations was also collected. Records were then matched, when possible, to registry records. For records with a registry match, immunization data were compared. Results Among 350 subjects from sites that were current registry users, 307 (87.7%) matched a registry record. Discrepancies in pertussis-related data were common for up-to-date status (22.6%), number of immunizations (34.7%), dates (10.2%), and formulation (34.4%). Among 442 subjects from sites that planned direct electronic transfer of immunization data to the registry, 393 (88.9%) would have matched a registry record; discrepancies occurred frequently in number of immunizations (11.9%), formulation (29.1%), manufacturer (94.4%), and lot number (95.1%.) Inability to match and immunization discrepancies were both more common in subjects who were

Rare disease registries: a call to action.

PubMed

Lacaze, Paul; Millis, Nicole; Fookes, Megan; Zurynski, Yvonne; Jaffe, Adam; Bellgard, Matthew; Winship, Ingrid; McNeil, John; Bittles, Alan H

2017-09-01

When registries collect accurate clinical data over time, they can act as fundamental support structures for patients and their families and powerful cost-effective instruments to support clinical trials and translational research to improve quality of care, quality of life and survival. Registries are critical for rare diseases (RD) with low prevalence and propensity for variation in treatment and outcomes. Rare Voices Australia is leading a call for action to the research and clinical community to prioritise RD data collection and develop an integrated RD Registry strategy for Australia. Financial, operational and governance challenges exist for establishing and maintaining RD registries. As a multidisciplinary team whose interests converge on RD, we highlight the need for the establishment of an Australian RD Registry Alliance. This 'umbrella' organisation will: (i) bring together existing RD registries across Australia; (ii) establish National RD Registry Standards to support interoperability and cohesion across registries; (iii) develop strategies to attract sustainable funding from government and other sources to maximise the utility of existing RD registries and support the development of new RD registries. The most important role for the Alliance would be to use the RD registries for translational research to address current knowledge gaps about RD and to improve the care for the over 1.4 million Australians estimated to live with RD. © 2017 Royal Australasian College of Physicians.

Immunization registries in the EMR Era

PubMed Central

Stevens, Lindsay A.; Palma, Jonathan P.; Pandher, Kiran K.; Longhurst, Christopher A.

2013-01-01

Background: The CDC established a national objective to create population-based tracking of immunizations through regional and statewide registries nearly 2 decades ago, and these registries have increased coverage rates and reduced duplicate immunizations. With increased adoption of commercial electronic medical records (EMR), some institutions have used unidirectional links to send immunization data to designated registries. However, access to these registries within a vendor EMR has not been previously reported. Purpose: To develop a visually integrated interface between an EMR and a statewide immunization registry at a previously non-reporting hospital, and to assess subsequent changes in provider use and satisfaction. Methods: A group of healthcare providers were surveyed before and after implementation of the new interface. The surveys addressed access of the California Immunization Registry (CAIR), and satisfaction with the availability of immunization information. Information Technology (IT) teams developed a “smart-link” within the electronic patient chart that provides a single-click interface for visual integration of data within the CAIR database. Results: Use of the tool has increased in the months since its initiation, and over 20,000 new immunizations have been exported successfully to CAIR since the hospital began sharing data with the registry. Survey data suggest that providers find this tool improves workflow and overall satisfaction with availability of immunization data. (p=0.009). Conclusions: Visual integration of external registries into a vendor EMR system is feasible and improves provider satisfaction and registry reporting. PMID:23923096

[Respiratory disease registries in Spain: fundamentals and organization].

PubMed

Lara, Beatriz; Morales, Pilar; Blanco, Ignacio; Vendrell, Montserrat; de Gracia Roldán, Javier; Monreal, Manel; Orriols, Ramón; Isidro, Isabel; Abú-Shams, Khalil; Escribano, Pilar; Villena, Victoria; Rodrigo, Teresa; Vidal Plà, Rafael; García-Yuste, Mariano; Miravitlles, Marc

2011-08-01

This present paper describes the general characteristics, objectives and organizational aspects of the respiratory disease registries in Spain with the aim to report their activities and increase their diffusion. The document compiles information on the following registries: the Spanish Registry of Patients with Alpha-1 Antitrypsin Deficiency, Spanish Registry of Bronchiectasis, International Registry of Thromboembolic Disease, Spanish Registry of Occupational Diseases, Spanish Registry of Pulmonary Artery Hypertension, Registry of Pleural Mesothelioma, Spanish Registry of Tuberculosis and Spanish Multi-center Study of Neuroendocrine Pulmonary Tumors. Our paper provides information on each of the registries cited. Each registry has compiled specific clinical information providing data in real situations, and completes the results obtained from clinical assays. Said information has been published both in national as well as international publications and has lead to the creation of various guidelines. Therefore, the activities of the professionals involved in the registries have spread the knowledge about the diseases studied, promoting the exchange of information among workgroups. Copyright © 2010 SEPAR. Published by Elsevier Espana. All rights reserved.

eXtended MetaData Registry

DOE Office of Scientific and Technical Information (OSTI.GOV)

2006-10-25

The purpose of the eXtended MetaData Registry (XMDR) prototype is to demonstrate the feasibility and utility of constructing an extended metadata registry, i.e., one which encompasses richer classification support, facilities for including terminologies, and better support for formal specification of semantics. The prototype registry will also serve as a reference implementation for the revised versions of ISO 11179, Parts 2 and 3 to help guide production implementations.

Annual Outcomes With Transcatheter Valve Therapy: From the STS/ACC TVT Registry.

PubMed

Holmes, David R; Nishimura, Rick A; Grover, Frederick L; Brindis, Ralph G; Carroll, John D; Edwards, Fred H; Peterson, Eric D; Rumsfeld, John S; Shahian, David M; Thourani, Vinod H; Tuzcu, E Murat; Vemulapalli, Sreekanth; Hewitt, Kathleen; Michaels, Joan; Fitzgerald, Susan; Mack, Michael J

2016-02-01

The Society of Thoracic Surgeons (STS)/American College of Cardiology (ACC) Transcatheter Valve Therapy (TVT) Registry has been a joint initiative of the STS and the ACC in concert with multiple stakeholders. The TVT Registry has important information regarding patient selection, delivery of care, science, education, and research in the field of structural valvular heart disease. This report provides an overview on current U.S. TVT practice and trends. The emphasis is on demographics, in-hospital procedural characteristics, and outcomes of patients having transcatheter aortic valve replacement (TAVR) performed at 348 U.S. centers. The TVT Registry captured 26,414 TAVR procedures as of December 31, 2014. Temporal trends between 2012 and 2013 versus 2014 were compared. Comparison of the 2 time periods reveals that TAVR patients remain elderly (mean age 82 years), with multiple comorbidities, reflected by a high mean STS predicted risk of mortality (STS PROM) for surgical valve replacement (8.34%), were highly symptomatic (New York Heart Association functional class III/IV in 82.5%), frail (slow 5-m walk test in 81.6%), and have poor self-reported health status (median baseline Kansas City Cardiomyopathy Questionnaire score of 39.1). Procedure performance is changing, with an increased use of moderate sedation (from 1.6% to 5.1%) and increase in femoral access using percutaneous techniques (66.8% in 2014). Vascular complication rates are decreasing (from 5.6% to 4.2%), whereas site-reported stroke rates remain stable at 2.2%. The TVT Registry provides important information on characteristics and outcomes of TAVR in contemporary U.S. clinical practice. It can be used to identify trends in practice and opportunities for quality improvement.

High risk occupations for non-Hodgkin's lymphoma in New Zealand: case-control study.

PubMed

't Mannetje, A; Dryson, E; Walls, C; McLean, D; McKenzie, F; Maule, M; Cheng, S; Cunningham, C; Kromhout, H; Boffetta, P; Blair, A; Pearce, N

2008-05-01

Previous studies into occupational risk factors for non-Hodgkin's lymphoma (NHL) in New Zealand have indicated that farmers and meat workers are at increased risk for these neoplasms. A new nationwide case-control study was conducted to assess whether previously observed associations persist and to identify other occupations that may contribute to the risk of NHL in the New Zealand population. A total of 291 incident cases of NHL (age 25-70 years) notified to the New Zealand Cancer Registry during 2003 and 2004, and 471 population controls, were interviewed face-to-face. The questionnaire collected demographic information and a full occupational history. The relative risk for NHL associated with ever being employed in particular occupations and industries was calculated by unconditional logistic regression adjusting for age, sex, smoking, ethnicity and socioeconomic status. Estimates were subsequently semi-Bayes adjusted to account for the large number of occupations and industries being considered. An elevated NHL risk was observed for field crop and vegetable growers (OR 2.74, 95% CI 1.04 to 7.25) and horticulture and fruit growing (OR 2.28, 95% CI 1.37 to 3.79), particularly for women (OR 3.44, 95% CI 0.62 to 18.9; OR 3.15, 95% CI 1.50 to 6.61). Sheep and dairy farming was not associated with an increased risk of NHL. Meat processors had an elevated risk (OR 1.97, 95% CI 0.97 to 3.97), as did heavy truck drivers (OR 1.98, 95% CI 0.92 to 4.24), workers employed in metal product manufacturing (OR 1.92, 95% CI 1.12 to 3.28) and cleaners (OR 2.11, 95% CI 1.21 to 3.65). After semi-Bayes adjustment the elevated risks for horticulture and fruit growing, metal product manufacturing and cleaners remained statistically significant, representing the most robust findings of this study. This study has confirmed that crop farmers and meat workers remain high risk occupations for NHL in New Zealand, and has identified several other occupations and industries of high NHL risk

Respiratory diseases registries in the national registry of rare diseases.

PubMed

Lara Gallego, Beatriz; Abaitua Borda, Ignacio; Galán Gil, Genaro; Castillo Villegas, Diego; Casanova Espinosa, Álvaro; Cano Jiménez, Esteban; Ojanguren Arranz, Iñigo; Posada de la Paz, Manuel

2014-09-01

This report describes the general characteristics, objectives and organizational aspects of the registries of rare respiratory diseases included in the National Registry of Rare Diseases of the Research Institute for Rare Diseases (ISCIII), in order to publicize their existence and encourage the participation of professionals. Information is collected on the following conditions: alpha-1 antitrypsin deficiency, idiopathic tracheal stenosis, adult pulmonary Langerhans' cell histiocytosis, lymphangioleiomyomatosis, alveolar proteinosis, and sarcoidosis. Copyright © 2013 SEPAR. Published by Elsevier Espana. All rights reserved.

Private provider participation in statewide immunization registries

PubMed Central

Clark, Sarah J; Cowan, Anne E; Bartlett, Diana L

2006-01-01

Background Population-based registries have been promoted as an effective method to improve childhood immunization rates, yet rates of registry participation in the private sector are low. We sought to describe, through a national overview, the perspectives of childhood immunization providers in private practice regarding factors associated with participation or non-participation in immunization registries. Methods Two mailed surveys, one for 264 private practices identified as registry non-participants and the other for 971 identified as registry participants, from 15 of the 31 states with population-based statewide immunization registries. Frequency distributions were calculated separately for non-participants and participants regarding the physician-reported factors that influenced decisions related to registry participation. Pearson chi-square tests of independence were used to assess associations among categorical variables. Results Overall response rate was 62% (N = 756). Among non-participants, easy access to records of vaccines provided at other sites (N = 101, 68%) and printable immunization records (N = 82, 55%) were most often cited as "very important" potential benefits of a registry, while the most commonly cited barriers to participation were too much cost/staff time (N = 36, 38%) and that the practice has its own system for recording and monitoring immunizations (N = 35, 37%). Among registry participants, most reported using the registry to input data on vaccines administered (N = 326, 87%) and to review immunization records of individual patients (N = 302, 81%). A minority reported using it to assess their practice's immunization coverage (N = 110, 29%) or generate reminder/recall notices (N = 54, 14%). Few participants reported experiencing "significant" problems with the registry; the most often cited was cost/staff time to use the registry (N = 71, 20%). Conclusion Most registry participants report active participation with few problems. The

Cross-sectional analysis of association between socioeconomic status and utilization of primary total hip joint replacements 2006-7: Australian Orthopaedic Association National Joint Replacement Registry.

PubMed

Brennan, Sharon L; Stanford, Tyman; Wluka, Anita E; Henry, Margaret J; Page, Richard S; Graves, Stephen E; Kotowicz, Mark A; Nicholson, Geoffrey C; Pasco, Julie A

2012-04-30

The utilization of total hip replacement (THR) surgery is rapidly increasing, however few data examine whether these procedures are associated with socioeconomic status (SES) within Australia. This study examined primary THR across SES for both genders for the Barwon Statistical Division (BSD) of Victoria, Australia. Using the Australian Orthopaedic Association National Joint Replacement Registry data for 2006-7, primary THR with a diagnosis of osteoarthritis (OA) among residents of the BSD was ascertained. The Index of Relative Socioeconomic Disadvantage was used to measure SES; determined by matching residential addresses with Australian Bureau of Statistics census data. The data were categorised into quintiles; quintile 1 indicating the most disadvantaged. Age- and sex-specific rates of primary THR per 1,000 person years were reported for 10-year age bands using the total population at risk. Females accounted for 46.9% of the 642 primary THR performed during 2006-7. THR utilization per 1,000 person years was 1.9 for males and 1.5 for females. The highest utilization of primary THR was observed in those aged 70-79 years (males 6.1, and females 5.4 per 1,000 person years). Overall, the U-shaped pattern of THR across SES gave the appearance of bimodality for both males and females, whereby rates were greater for both the most disadvantaged and least disadvantaged groups. Further work on a larger scale is required to determine whether relationships between SES and THR utilization for the diagnosis of OA is attributable to lifestyle factors related to SES, or alternatively reflects geographic and health system biases. Identifying contributing factors associated with SES may enhance resource planning and enable more effective and focussed preventive strategies for hip OA.

A novel lecithin based delivery form of Boswellic acids (Casperome®) for the management of osteo-muscular pain: a registry study in young rugby players.

PubMed

Franceschi, F; Togni, S; Belcaro, G; Dugall, M; Luzzi, R; Ledda, A; Pellegrini, L; Eggenhoffner, R; Giacomelli, L

2016-10-01

Several experimental studies and clinical trials support the potential of Boswellia serrata extracts (BSE) for the treatment of various inflammatory diseases. The aim of this registry study was to assess the safety and the efficacy of a novel lecithin-based delivery form of Boswellia serrata extract (Casperome®) in the supportive management of osteo-muscular pain. 52 healthy young rugby players with acute knee pain and inflammation were recruited. Informed participants freely decided to follow either a standard management (SM) to control joint pain (control group = 27) or SM associated with oral daily supplementation with Casperome® (supplement group =25). Parameters associated with osteo-muscular pain and inflammation, and measurements of joint health and functions were assessed at the inclusion and after a 4-week supplementation. A significant beneficial effect of Casperome® vs SM alone was observed for all the parameters evaluated, namely: local pain on effort; pain-free walking distance (treadmill test); minimal joint effusion; structural damage (joint, tendons, muscles) and intramuscular hematomas; thermal imaging of the anterior knee; Visual Analog Scale for Pain (VAS Pain); need for concomitant drugs and medical attention; measurement of inflammatory biomarkers. Our registry study suggests that Casperome® supplementation could represent an effective and safe, integrated approach for the treatment of osteo-muscular pain and inflammation.

Glocal clinical registries: pacemaker registry design and implementation for global and local integration--methodology and case study.

PubMed

da Silva, Kátia Regina; Costa, Roberto; Crevelari, Elizabeth Sartori; Lacerda, Marianna Sobral; de Moraes Albertini, Caio Marcos; Filho, Martino Martinelli; Santana, José Eduardo; Vissoci, João Ricardo Nickenig; Pietrobon, Ricardo; Barros, Jacson V

2013-01-01

The ability to apply standard and interoperable solutions for implementing and managing medical registries as well as aggregate, reproduce, and access data sets from legacy formats and platforms to advanced standard formats and operating systems are crucial for both clinical healthcare and biomedical research settings. Our study describes a reproducible, highly scalable, standard framework for a device registry implementation addressing both local data quality components and global linking problems. We developed a device registry framework involving the following steps: (1) Data standards definition and representation of the research workflow, (2) Development of electronic case report forms using REDCap (Research Electronic Data Capture), (3) Data collection according to the clinical research workflow and, (4) Data augmentation by enriching the registry database with local electronic health records, governmental database and linked open data collections, (5) Data quality control and (6) Data dissemination through the registry Web site. Our registry adopted all applicable standardized data elements proposed by American College Cardiology / American Heart Association Clinical Data Standards, as well as variables derived from cardiac devices randomized trials and Clinical Data Interchange Standards Consortium. Local interoperability was performed between REDCap and data derived from Electronic Health Record system. The original data set was also augmented by incorporating the reimbursed values paid by the Brazilian government during a hospitalization for pacemaker implantation. By linking our registry to the open data collection repository Linked Clinical Trials (LinkedCT) we found 130 clinical trials which are potentially correlated with our pacemaker registry. This study demonstrates how standard and reproducible solutions can be applied in the implementation of medical registries to constitute a re-usable framework. Such approach has the potential to facilitate

The New Zealand PIPER Project: colorectal cancer survival according to rurality, ethnicity and socioeconomic deprivation-results from a retrospective cohort study.

PubMed

Sharples, Katrina J; Firth, Melissa J; Hinder, Victoria A; Hill, Andrew G; Jeffery, Mark; Sarfati, Diana; Brown, Charis; Atmore, Carol; Lawrenson, Ross A; Reid, Papaarangi Mj; Derrett, Sarah L; Macapagal, Jerome; Keating, John P; Secker, Adrian H; De Groot, Charles; Jackson, Christopher Gca; Findlay, Michael Pn

2018-06-08

To investigate differences in survival after diagnosis with colorectal cancer (CRC) by rurality, ethnicity and deprivation. In this retrospective cohort study, clinical records and National Collections data were merged for all patients diagnosed with CRC in New Zealand in 2007-2008. Prioritised ethnicity was classified using New Zealand Cancer Registry data; meshblock of residence at diagnosis was used to determine rurality and socioeconomic deprivation. Of the 4,950 patients included, 1,938 had died of CRC by May 2014. The five-year risks of death from CRC were: Māori 47%; Pacific 59%; non-Māori-non-Pacific (nMnP) 38%. After adjustment for demographic characteristics, comorbidity and disease stage at diagnosis, compared to nMnP the relative risk (RR) for Māori was 1.1 (95%CI: 0.8-1.3) and for Pacific 1.8 (95% CI: 1.4-2.5). We found no differences in risk of death from CRC by rurality, but some differences by deprivation. Disparity in outcome following diagnosis with CRC exists in New Zealand. Much of this disparity can be explained by stage of disease at diagnosis for Māori, but for Pacific peoples and those in deprived areas other factors may influence outcome. Further analyses of the PIPER data will explore the impact of any differences in management.

Current situation and challenge of registry in China.

PubMed

Zhang, Yang; Feng, Yuji; Qu, Zhi; Qi, Yali; Zhan, Siyan

2014-09-01

Increasing emphasis has been placed on registries for an organized system used in developing clinical research to improve health care. China has sufficient data that can be applied broadly, but the heterogeneity and irregularity of registries limit their applicability. This article aims to describe the status of registries in China and the related challenges. Patient registries for observational studies were retrieved from the International Clinical Trials Registry to quantitatively evaluate the number of comparatively high-quality registries in China. A literature search was also performed to provide support and updates. A total of 64 patient registries were retrieved from ClinicalTrials.gov using disease, product, and health service as criteria. The sample sizes ranged from 15 to 30,400, with only 12 registries marked as completed. This article describes and compares the detailed information in many aspects. The efficient use of registries has already made considerable progress in China; however, registries still require standardization, high-quality transition, and coordinated development.

20 CFR 655.34 - Electronic job registry.

Code of Federal Regulations, 2014 CFR

2014-04-01

... 20 Employees' Benefits 3 2014-04-01 2014-04-01 false Electronic job registry. 655.34 Section 655... Electronic job registry. (a) Location of and placement in the electronic job registry. Upon acceptance of the... copy of the job order posted by the SWA on the Department's electronic job registry, including any...

20 CFR 655.34 - Electronic job registry.

Code of Federal Regulations, 2013 CFR

2013-04-01

... 20 Employees' Benefits 3 2013-04-01 2013-04-01 false Electronic job registry. 655.34 Section 655... Electronic job registry. (a) Location of and placement in the electronic job registry. Upon acceptance of the... copy of the job order posted by the SWA on the Department's electronic job registry, including any...

20 CFR 655.144 - Electronic job registry.

Code of Federal Regulations, 2013 CFR

2013-04-01

... 20 Employees' Benefits 3 2013-04-01 2013-04-01 false Electronic job registry. 655.144 Section 655... Certification § 655.144 Electronic job registry. (a) Location of and placement in the electronic job registry... promptly place for public examination a copy of the job order on an electronic job registry maintained by...

20 CFR 655.144 - Electronic job registry.

Code of Federal Regulations, 2010 CFR

2010-04-01

... 20 Employees' Benefits 3 2010-04-01 2010-04-01 false Electronic job registry. 655.144 Section 655... Certification § 655.144 Electronic job registry. (a) Location of and placement in the electronic job registry... promptly place for public examination a copy of the job order on an electronic job registry maintained by...

20 CFR 655.144 - Electronic job registry.

Code of Federal Regulations, 2014 CFR

2014-04-01

... 20 Employees' Benefits 3 2014-04-01 2014-04-01 false Electronic job registry. 655.144 Section 655... Certification § 655.144 Electronic job registry. (a) Location of and placement in the electronic job registry... promptly place for public examination a copy of the job order on an electronic job registry maintained by...

20 CFR 655.144 - Electronic job registry.

Code of Federal Regulations, 2011 CFR

2011-04-01

... 20 Employees' Benefits 3 2011-04-01 2011-04-01 false Electronic job registry. 655.144 Section 655... Certification § 655.144 Electronic job registry. (a) Location of and placement in the electronic job registry... promptly place for public examination a copy of the job order on an electronic job registry maintained by...

20 CFR 655.144 - Electronic job registry.

Code of Federal Regulations, 2012 CFR

2012-04-01

... 20 Employees' Benefits 3 2012-04-01 2012-04-01 false Electronic job registry. 655.144 Section 655... Certification § 655.144 Electronic job registry. (a) Location of and placement in the electronic job registry... promptly place for public examination a copy of the job order on an electronic job registry maintained by...

Setting up of the Indian HIPEC Registry: A Registry for Indian Patients with Peritoneal Surface Malignancies.

PubMed

Bhatt, Aditi; Mehta, Sanket; Ramakrishnan As; Pande, Pankaj; Rajan, Firoz; Rangole, Ashvin; Saklani, Avanish; Sethna, Kayomarz; Singh, Shivendra; Zaveri, Shabber; Gopinath, K S

2017-12-01

There are various registries for patients with peritoneal metastases (PM) that aid pooling of data and generate evidence that dictates current clinical practice. This manuscript describes the setting up of the Indian HIPEC registry that was set up with a similar goal by a group of Indian surgeons. This is a registry for patients with PM treated with CRS and HIPEC in India. It also acts as a database for storing treatment-related information. Patients with PM from colorectal ovarian, gastric, appendiceal tumors, and other rare peritoneal tumors/metastases from rare tumors are enrolled in the registry. A coordinator updates the disease status of patients on a yearly basis. A private organization maintains the database. A non-disclosure agreement is signed between the company and each surgeon contributing to the registry to maintain confidentiality. For enrolling patients, securing institutional permission depends on the requirement of each institute; patient consent is mandatory. Data entry can be prospective or retrospective. To propose and conduct a study, the approval of a scientific committee linked to the registry is required. The Indian HIPEC registry is a practical database for Indian surgeons. There is no regulatory body that mandates collection and publication of scientific data in India. The onus is on each surgeon to capture valuable information pertaining to these common and rare diseases that could contribute to the existing scientific knowledge and guide the treatment of these patients in the future. The next challenge will be to enter data into the registry.

Clinical Case Registries: Simultaneous Local and National Disease Registries for Population Quality Management

PubMed Central

Backus, Lisa I.; Gavrilov, Sergey; Loomis, Timothy P.; Halloran, James P.; Phillips, Barbara R.; Belperio, Pamela S.; Mole, Larry A.

2009-01-01

The Department of Veterans Affairs (VA) has a system-wide, patient-centric electronic medical record system (EMR) within which the authors developed the Clinical Case Registries (CCR) to support population-centric delivery and evaluation of VA medical care. To date, the authors have applied the CCR to populations with human immunodeficiency virus (HIV) and hepatitis C virus (HCV). Local components use diagnosis codes and laboratory test results to identify patients who may have HIV or HCV and support queries on local care delivery with customizable reports. For each patient in a local registry, key EMR data are transferred via HL7 messaging to a single national registry. From 128 local registry systems, over 60,000 and 320,000 veterans in VA care have been identified as having HIV and HCV, respectively, and entered in the national database. Local and national reports covering demographics, resource usage, quality of care metrics and medication safety issues have been generated. PMID:19717794

Electronic Medical Consultation: A New Zealand Perspective

PubMed Central

Brebner, Campbell; Jones, Raymond; Marshall, Wendy; Parry, Graham

2001-01-01

Electronic medical consultation is available worldwide through access to the World Wide Web (WWW). This article outlines a research study on the adoption of electronic medical consultation as a means of health delivery. It focuses on the delivery of healthcare specifically for New Zealanders, by New Zealanders. It is acknowledged that the WWW is a global marketplace and that it is therefore difficult to identify New Zealanders' use of such a global market; nevertheless, we attempt to provide a New Zealand perspective on electronic medical consultation. PMID:11720955

Evidence and practice in spine registries

PubMed Central

van Hooff, Miranda L; Jacobs, Wilco C H; Willems, Paul C; Wouters, Michel W J M; de Kleuver, Marinus; Peul, Wilco C; Ostelo, Raymond W J G; Fritzell, Peter

2015-01-01

Background and purpose We performed a systematic review and a survey in order to (1) evaluate the evidence for the impact of spine registries on the quality of spine care, and with that, on patient-related outcomes, and (2) evaluate the methodology used to organize, analyze, and report the “quality of spine care” from spine registries. Methods To study the impact, the literature on all spinal disorders was searched. To study methodology, the search was restricted to degenerative spinal disorders. The risk of bias in the studies included was assessed with the Newcastle-Ottawa scale. Additionally, a survey among registry representatives was performed to acquire information about the methodology and practice of existing registries. Results 4,273 unique references up to May 2014 were identified, and 1,210 were eligible for screening and assessment. No studies on impact were identified, but 34 studies were identified to study the methodology. Half of these studies (17 of the 34) were judged to have a high risk of bias. The survey identified 25 spine registries, representing 14 countries. The organization of these registries, methods used, analytical approaches, and dissemination of results are presented. Interpretation We found a lack of evidence that registries have had an impact on the quality of spine care, regardless of whether intervention was non-surgical and/or surgical. To improve the quality of evidence published with registry data, we present several recommendations. Application of these recommendations could lead to registries showing trends, monitoring the quality of spine care given, and ultimately improving the value of the care given to patients with degenerative spinal disorders. PMID:25909475

[Survey on computerized immunization registries in Italy].

PubMed

Alfonsi, V; D'Ancona, F; Ciofi degli Atti, M L

2008-01-01

Computerized immunization registries are essential for conducting and monitoring vaccination programs. In fact, they enable to improve vaccine offering to target population, generating needed-immunization lists and assessing levels of vaccination coverage. In 2007, a national survey on immunization registries was conducted in Italy. In February 2007, all the 21 Regional Health Authorities (RHAs) completed and returned an ad hoc questionnaire. In June 2007, RHAs were further contacted by telephone in order to verify and update the information provided in questionnaires. In 9 Italian Regions (42.8%), vaccination registries are computerized in all Local Health Units (LHUs). In five of these Regions, all LHUs use the same software, while in the remaining four Regions, different softwares are in use. In six additional Regions (28.6%), only some LHUs use computerized immunization registries (range 61.5%-95%). In the remaining 6 Regions (28.6%), which are all in Southern Italy, there are no computerised immunization registries at all. In total, computerised immunization registries cover 126/180 Italian LHUs (70%); in 76/126 (60%) of these LUHs, immunization registries are linked with population registries. This survey shows the need to improve the implementation of computerised immunization registries in Italy, especially in Southern Regions.

27 CFR 24.115 - Registry number.

Code of Federal Regulations, 2013 CFR

2013-04-01

... 27 Alcohol, Tobacco Products and Firearms 1 2013-04-01 2013-04-01 false Registry number. 24.115... OF THE TREASURY ALCOHOL WINE Establishment and Operations Application § 24.115 Registry number. Upon approval of the application, the appropriate TTB officer will assign a registry number to the bonded winery...

27 CFR 24.115 - Registry number.

Code of Federal Regulations, 2014 CFR

2014-04-01

... 27 Alcohol, Tobacco Products and Firearms 1 2014-04-01 2014-04-01 false Registry number. 24.115... OF THE TREASURY ALCOHOL WINE Establishment and Operations Application § 24.115 Registry number. Upon approval of the application, the appropriate TTB officer will assign a registry number to the bonded winery...

27 CFR 24.115 - Registry number.

Code of Federal Regulations, 2012 CFR

2012-04-01

... 27 Alcohol, Tobacco Products and Firearms 1 2012-04-01 2012-04-01 false Registry number. 24.115... OF THE TREASURY LIQUORS WINE Establishment and Operations Application § 24.115 Registry number. Upon approval of the application, the appropriate TTB officer will assign a registry number to the bonded winery...

Grassland production under global change scenarios for New Zealand pastoral agriculture

NASA Astrophysics Data System (ADS)

Keller, E. D.; Baisden, W. T.; Timar, L.; Mullan, B.; Clark, A.

2014-10-01

We adapt and integrate the Biome-BGC and Land Use in Rural New Zealand models to simulate pastoral agriculture and to make land-use change, intensification of agricultural activity and climate change scenario projections of New Zealand's pasture production at time slices centred on 2020, 2050 and 2100, with comparison to a present-day baseline. Biome-BGC model parameters are optimised for pasture production in both dairy and sheep/beef farm systems, representing a new application of the Biome-BGC model. Results show up to a 10% increase in New Zealand's national pasture production in 2020 under intensification and a 1-2% increase by 2050 from economic factors driving land-use change. Climate change scenarios using statistically downscaled global climate models (GCMs) from the IPCC Fourth Assessment Report also show national increases of 1-2% in 2050, with significant regional variations. Projected out to 2100, however, these scenarios are more sensitive to the type of pasture system and the severity of warming: dairy systems show an increase in production of 4% under mild change but a decline of 1% under a more extreme case, whereas sheep/beef production declines in both cases by 3 and 13%, respectively. Our results suggest that high-fertility systems such as dairying could be more resilient under future change, with dairy production increasing or only slightly declining in all of our scenarios. These are the first national-scale estimates using a model to evaluate the joint effects of climate change, CO2 fertilisation and N-cycle feedbacks on New Zealand's unique pastoral production systems that dominate the nation's agriculture and economy. Model results emphasise that CO2 fertilisation and N-cycle feedback effects are responsible for meaningful differences in agricultural systems. More broadly, we demonstrate that our model output enables analysis of decoupled land-use change scenarios: the Biome-BGC data products at a national or regional level can be re

Grassland production under global change scenarios for New Zealand pastoral agriculture

NASA Astrophysics Data System (ADS)

Keller, E. D.; Baisden, W. T.; Timar, L.; Mullan, B.; Clark, A.

2014-05-01

We adapt and integrate the Biome-BGC and Land Use in Rural New Zealand (LURNZ) models to simulate pastoral agriculture and to make land-use change, intensification and climate change scenario projections of New Zealand's pasture production at time slices centred on 2020, 2050 and 2100, with comparison to a present-day baseline. Biome-BGC model parameters are optimised for pasture production in both dairy and sheep/beef farm systems, representing a new application of the Biome-BGC model. Results show up to a 10% increase in New Zealand's national pasture production in 2020 under intensification and a 1-2% increase by 2050 from economic factors driving land-use change. Climate change scenarios using statistically downscaled global climate models (GCMs) from the IPCC Fourth Assessment Report (AR4) also show national increases of 1-2% in 2050, with significant regional variations. Projected out to 2100, however, these scenarios are more sensitive to the type of pasture system and the severity of warming: dairy systems show an increase in production of 4% under mild change but a decline of 1% under a more extreme case, whereas sheep/beef production declines in both cases by 3% and 13%, respectively. Our results suggest that high-fertility systems such as dairying could be more resilient under future change, with dairy production increasing or only slightly declining in all of our scenarios. These are the first national-scale estimates using a model to evaluate the joint effects of climate change, CO2 fertilisation and N-cycle feedbacks on New Zealand's unique pastoral production systems that dominate the nation's agriculture and economy. Model results emphasize that CO2 fertilisation and N cycle feedback effects are responsible for meaningful differences in agricultural systems. More broadly, we demonstrate that our model output enables analysis of Decoupled Land-Use Change Scenarios (DLUCS): the Biome-BGC data products at a national or regional level can be re

How complete are immunization registries? The Philadelphia story.

PubMed

Kolasa, Maureen S; Chilkatowsky, Andrew P; Clarke, Kevin R; Lutz, James P

2006-01-01

To assess accuracy and completeness of Philadelphia, Pa, registry data among children served by providers in areas at risk for underimmunization. Philadelphia's Department of Public Health selected a simple random sample of 45 children age 19-35 months (or all children age 19-35 months if there were <45 children in the practice) from each of 30 private practices receiving government-funded vaccine and located in zip codes where children are at risk for underimmunization. Chart and registry data were compared with determine the proportion of children missing from the registry and assess differences in immunization coverage. Of 620 children reviewed, 567 (92%) were in the registry. Significant differences (P < .05) were observed in immunization coverage for 4 diphtheria-tetanus-acellular pertussis vaccinations, 3 polio vaccinations, 1 measles-mumps-rubella vaccination, and 3 Haemophilus influenzae type b vaccinations between the chart (80% coverage) and registry (62% coverage). Providers submitting electronic medical records or directly transferring electronic data to the registry had significantly more children in the registry and higher registry-reported immunization coverage than those whose data were entered from billing records or log forms. All practice types experienced difficulties in transferring complete data to the registry. Although 92% of study children were in the registry, immunization coverage was significantly lower when registry data were compared with chart data. Because electronic medical records and direct electronic data transfer resulted in more complete registry data, these methods should be encouraged in linking providers with immunization registries.

The value of trauma registries.

PubMed

Moore, Lynne; Clark, David E

2008-06-01

Trauma registries are databases that document acute care delivered to patients hospitalised with injuries. They are designed to provide information that can be used to improve the efficiency and quality of trauma care. Indeed, the combination of trauma registry data at regional or national levels can produce very large databases that allow unprecedented opportunities for the evaluation of patient outcomes and inter-hospital comparisons. However, the creation and upkeep of trauma registries requires a substantial investment of money, time and effort, data quality is an important challenge and aggregated trauma data sets rarely represent a population-based sample of trauma. In addition, trauma hospitalisations are already routinely documented in administrative hospital discharge databases. The present review aims to provide evidence that trauma registry data can be used to improve the care dispensed to victims of injury in ways that could not be achieved with information from administrative databases alone. In addition, we will define the structure and purpose of contemporary trauma registries, acknowledge their limitations, and discuss possible ways to make them more useful.

A Prototype Publishing Registry for the Virtual Observatory

NASA Astrophysics Data System (ADS)

Williamson, R.; Plante, R.

2004-07-01

In the Virtual Observatory (VO), a registry helps users locate resources, such as data and services, in a distributed environment. A general framework for VO registries is now under development within the International Virtual Observatory Alliance (IVOA) Registry Working Group. We present a prototype of one component of this framework: the publishing registry. The publishing registry allows data providers to expose metadata descriptions of their resources to the VO environment. Searchable registries can harvest the metadata from many publishing registries and make them searchable by users. We have developed a prototype publishing registry that data providers can install at their sites to publish their resources. The descriptions are exposed using the Open Archive Initiative (OAI) Protocol for Metadata Harvesting. Automating the input of metadata into registries is critical when a provider wishes to describe many resources. We illustrate various strategies for such automation, both currently in use and planned for the future. We also describe how future versions of the registry can adapt automatically to evolving metadata schemas for describing resources.

The New Zealand Food Composition Database: A useful tool for assessing New Zealanders' nutrient intake.

PubMed

Sivakumaran, Subathira; Huffman, Lee; Sivakumaran, Sivalingam

2018-01-01

A country-specific food composition databases is useful for assessing nutrient intake reliably in national nutrition surveys, research studies and clinical practice. The New Zealand Food Composition Database (NZFCDB) programme seeks to maintain relevant and up-to-date food records that reflect the composition of foods commonly consumed in New Zealand following Food Agricultural Organisation of the United Nations/International Network of Food Data Systems (FAO/INFOODS) guidelines. Food composition data (FCD) of up to 87 core components for approximately 600 foods have been added to NZFCDB since 2010. These foods include those identified as providing key nutrients in a 2008/09 New Zealand Adult Nutrition Survey. Nutrient data obtained by analysis of composite samples or are calculated from analytical data. Currently >2500 foods in 22 food groups are freely available in various NZFCDB output products on the website: www.foodcomposition.co.nz. NZFCDB is the main source of FCD for estimating nutrient intake in New Zealand nutrition surveys. Copyright © 2016 Elsevier Ltd. All rights reserved.

The New Zealand 1986 very low birth weight cohort as young adults: mapping the road ahead.

PubMed

Darlow, Brian A; Horwood, L John; Woodward, Lianne J; Elliott, John M; Troughton, Richard W; Elder, Mark J; Epton, Michael J; Stanton, Josh D; Swanney, Maureen P; Keenan, Ross; Melzer, Tracy R; McKelvey, Victoria A; Levin, Karelia; Meeks, Margaret G; Espiner, Eric A; Cameron, Vicky A; Martin, Julia

2015-08-05

graduates transitioning to adult care, and help shape health education and social policies for this high risk group. Australian New Zealand Clinical Trials Registry ACTRN12612000995875 . Registered 1 October 2012.

Risk of stomach cancer in Aotearoa/New Zealand: A Māori population based case-control study

PubMed Central

Sporle, Andrew; Corbin, Marine; Cheng, Soo; Harawira, Pauline; Gray, Michelle; Whaanga, Tracey; Guilford, Parry; Koea, Jonathan; Pearce, Neil

2017-01-01

Māori, the indigenous people of New Zealand, experience disproportionate rates of stomach cancer, compared to non-Māori. The overall aim of the study was to better understand the reasons for the considerable excess of stomach cancer in Māori and to identify priorities for prevention. Māori stomach cancer cases from the New Zealand Cancer Registry between 1 February 2009 and 31 October 2013 and Māori controls, randomly selected from the New Zealand electoral roll were matched by 5-year age bands to cases. Logistic regression was used to estimate odd ratios (OR) and 95% confidence intervals (CI) between exposures and stomach cancer risk. Post-stratification weighting of controls was used to account for differential non-response by deprivation category. The study comprised 165 cases and 480 controls. Nearly half (47.9%) of cases were of the diffuse subtype. There were differences in the distribution of risk factors between cases and controls. Of interest were the strong relationships seen with increased stomach risk and having >2 people sharing a bedroom in childhood (OR 3.30, 95%CI 1.95–5.59), testing for H pylori (OR 12.17, 95%CI 6.15–24.08), being an ex-smoker (OR 2.26, 95%CI 1.44–3.54) and exposure to environmental tobacco smoke in adulthood (OR 3.29, 95%CI 1.94–5.59). Some results were attenuated following post-stratification weighting. This is the first national study of stomach cancer in any indigenous population and the first Māori-only population-based study of stomach cancer undertaken in New Zealand. We emphasize caution in interpreting the findings given the possibility of selection bias. Population-level strategies to reduce the incidence of stomach cancer in Māori include expanding measures to screen and treat those infected with H pylori and a continued policy focus on reducing tobacco consumption and uptake. PMID:28732086

The FOP Connection Registry: Design of an international patient-sponsored registry for Fibrodysplasia Ossificans Progressiva.

PubMed

Mantick, Neal; Bachman, Eric; Baujat, Genevieve; Brown, Matt; Collins, Oliver; De Cunto, Carmen; Delai, Patricia; Eekhoff, Marelise; Zum Felde, Roger; Grogan, Donna Roy; Haga, Nobuhiko; Hsiao, Edward; Kantanie, Sharon; Kaplan, Frederick; Keen, Richard; Milosevic, Jelena; Morhart, Rolf; Pignolo, Robert; Qian, Xiaobing; di Rocco, Maja; Scott, Christiaan; Sherman, Adam; Wallace, Marin; Williams, Nicky; Zhang, Keqin; Bogard, Betsy

2018-04-01

The Fibrodysplasia Ossificans Progressiva (FOP) Connection Registry is an international, voluntary, observational study that directly captures demographic and disease information initially from patients with FOP (the patient portal) and in the near future from treating physicians (the physician portal) via a secure web-based tool. It was launched by the International FOP Association (IFOPA) with a guiding vision to develop and manage one unified, global, and coordinated Registry allowing the assembly of the most comprehensive data on FOP. This will ultimately facilitate greater access and sharing of patient data and enable better and faster development of therapies and tracking their long-term treatment effectiveness and safety. This report outlines the FOP Connection Registry's design and procedures for data collection and reporting, as well as the long-term sustainability of Registry. Patient-reported, aggregate data are summarized for the first 196 enrolled patients, representing participation from 42 countries and approximately 25% of the world's known FOP population. Fifty-seven percent of the current Registry participants are female with a mean age of 23.8years (median=21years, range=1, 76years). Among the Registry participants who provided their FOP type, 51% reported FOP Classic (R206H), 41% reported FOP Type Unknown, and 8% reported FOP Variant. Patients reported 5.4years (median=3.0years, range=0, 45.8years) as the mean age at which they noticed their first FOP symptoms and a mean age at final FOP diagnosis of 7.5years (median=5.0years, range=0.1, 48.4years). Information on the patients' diagnostic journeys in arriving at a correct diagnosis of FOP is also presented. These early patient-reported data suggest that the IFOPA's vision of one, unified, global, and coordinated approach to the FOP Connection Registry is well underway to being realized. In addition, the positive response from the FOP patient community to the initial launch of the Registry

Performing Manaaki and New Zealand Refugee Theatre

ERIC Educational Resources Information Center

Hazou, Rand T.

2018-01-01

In September 2015, and in response to the Syrian refugee crisis, there were widespread calls in New Zealand urging the Government to raise its annual Refugee Quota. Maori Party co-leader Marama Fox argued that New Zealand could afford to take on more refugees as part of its global citizenship and suggested that New Zealand's policy might be shaped…

Client interfaces to the Virtual Observatory Registry

NASA Astrophysics Data System (ADS)

Demleitner, M.; Harrison, P.; Taylor, M.; Normand, J.

2015-04-01

The Virtual Observatory Registry is a distributed directory of information systems and other resources relevant to astronomy. To make it useful, facilities to query that directory must be provided to humans and machines alike. This article reviews the development and status of such facilities, also considering the lessons learnt from about a decade of experience with Registry interfaces. After a brief outline of the history of the standards development, it describes the use of Registry interfaces in some popular clients as well as dedicated UIs for interrogating the Registry. It continues with a thorough discussion of the design of the two most recent Registry interface standards, RegTAP on the one hand and a full-text-based interface on the other hand. The article finally lays out some of the less obvious conventions that emerged in the interaction between providers of registry records and Registry users as well as remaining challenges and current developments.

New Zealand geothermal: Wairakei -- 40 years

DOE Office of Scientific and Technical Information (OSTI.GOV)

NONE

This quarterly bulletin highlights the geothermal developments in New Zealand with the following articles: A brief history of the Wairakei geothermal power project; Geothermal resources in New Zealand -- An overview; Domestic and commercial heating and bathing -- Rotorua area; Kawerau geothermal development: A case study; Timber drying at Kawerau; Geothermal greenhouses at Kawerau; Drying of fibrous crops using geothermal steam and hot water at the Taupo Lucerne Company; Prawn Park -- Taupo, New Zealand; Geothermal orchids; Miranda hot springs; and Geothermal pipeline.

The European Cystic Fibrosis Society Patient Registry: valuable lessons learned on how to sustain a disease registry.

PubMed

Viviani, Laura; Zolin, Anna; Mehta, Anil; Olesen, Hanne Vebert

2014-06-07

Disease registries have the invaluable potential to provide an insight into the natural history of the disease under investigation, to provide useful information (e.g. through health indicators) for planning health care services and to identify suitable groups of patients for clinical trials enrolment. However, the establishment and maintenance of disease registries is a burdensome initiative from economical and organisational points of view and experience sharing on registries management is important to avoid waste of resources. The aim of this paper is to discuss the problems embedded in the institution and management of an international disease registry to warn against common mistakes that can derail the best of intentions: we share the experience of the European Cystic Fibrosis Society Patient Registry, which collects data on almost 30,000 patients from 23 countries. We discuss the major problems that researchers often encounter in the creation and management of disease registries: definition of the aims the registry has to reach, definition of the criteria for patients referral to the registry, definition of the information to record, set up of a data quality process, handling of missing data, maintenance of data confidentiality, regulation of data use and dissemination of research results. We give examples on how many crucial aspects were solved by the European Cystic Fibrosis Society Patient Registry regarding objectives, inclusion criteria and variables definition, data management, data quality controls, missing data handling, confidentiality maintenance, data use and results dissemination. We suggest an extensive literature research and discussions in working groups with different stake holders, including patient representatives, on the objectives, inclusion criteria and the information to record. We propose to pilot the recording of few variables and test the applicability of their definition first. The use of a shared electronic platform for data

The European Cystic Fibrosis Society Patient Registry: valuable lessons learned on how to sustain a disease registry

PubMed Central

2014-01-01

Background Disease registries have the invaluable potential to provide an insight into the natural history of the disease under investigation, to provide useful information (e.g. through health indicators) for planning health care services and to identify suitable groups of patients for clinical trials enrolment. However, the establishment and maintenance of disease registries is a burdensome initiative from economical and organisational points of view and experience sharing on registries management is important to avoid waste of resources. The aim of this paper is to discuss the problems embedded in the institution and management of an international disease registry to warn against common mistakes that can derail the best of intentions: we share the experience of the European Cystic Fibrosis Society Patient Registry, which collects data on almost 30,000 patients from 23 countries. Methods We discuss the major problems that researchers often encounter in the creation and management of disease registries: definition of the aims the registry has to reach, definition of the criteria for patients referral to the registry, definition of the information to record, set up of a data quality process, handling of missing data, maintenance of data confidentiality, regulation of data use and dissemination of research results. Results We give examples on how many crucial aspects were solved by the European Cystic Fibrosis Society Patient Registry regarding objectives, inclusion criteria and variables definition, data management, data quality controls, missing data handling, confidentiality maintenance, data use and results dissemination. Conclusions We suggest an extensive literature research and discussions in working groups with different stake holders, including patient representatives, on the objectives, inclusion criteria and the information to record. We propose to pilot the recording of few variables and test the applicability of their definition first. The use of a

Glocal Clinical Registries: Pacemaker Registry Design and Implementation for Global and Local Integration – Methodology and Case Study

PubMed Central

da Silva, Kátia Regina; Costa, Roberto; Crevelari, Elizabeth Sartori; Lacerda, Marianna Sobral; de Moraes Albertini, Caio Marcos; Filho, Martino Martinelli; Santana, José Eduardo; Vissoci, João Ricardo Nickenig; Pietrobon, Ricardo; Barros, Jacson V.

2013-01-01

Background The ability to apply standard and interoperable solutions for implementing and managing medical registries as well as aggregate, reproduce, and access data sets from legacy formats and platforms to advanced standard formats and operating systems are crucial for both clinical healthcare and biomedical research settings. Purpose Our study describes a reproducible, highly scalable, standard framework for a device registry implementation addressing both local data quality components and global linking problems. Methods and Results We developed a device registry framework involving the following steps: (1) Data standards definition and representation of the research workflow, (2) Development of electronic case report forms using REDCap (Research Electronic Data Capture), (3) Data collection according to the clinical research workflow and, (4) Data augmentation by enriching the registry database with local electronic health records, governmental database and linked open data collections, (5) Data quality control and (6) Data dissemination through the registry Web site. Our registry adopted all applicable standardized data elements proposed by American College Cardiology / American Heart Association Clinical Data Standards, as well as variables derived from cardiac devices randomized trials and Clinical Data Interchange Standards Consortium. Local interoperability was performed between REDCap and data derived from Electronic Health Record system. The original data set was also augmented by incorporating the reimbursed values paid by the Brazilian government during a hospitalization for pacemaker implantation. By linking our registry to the open data collection repository Linked Clinical Trials (LinkedCT) we found 130 clinical trials which are potentially correlated with our pacemaker registry. Conclusion This study demonstrates how standard and reproducible solutions can be applied in the implementation of medical registries to constitute a re-usable framework

Annual Outcomes With Transcatheter Valve Therapy: From the STS/ACC TVT Registry.

PubMed

Holmes, David R; Nishimura, Rick A; Grover, Frederick L; Brindis, Ralph G; Carroll, John D; Edwards, Fred H; Peterson, Eric D; Rumsfeld, John S; Shahian, David M; Thourani, Vinod H; Tuzcu, E Murat; Vemulapalli, Sreekanth; Hewitt, Kathleen; Michaels, Joan; Fitzgerald, Susan; Mack, Michael J

2015-12-29

The Society of Thoracic Surgeons (STS)/American College of Cardiology (ACC) Transcatheter Valve Therapy (TVT) Registry has been a joint initiative of the STS and the ACC in concert with multiple stakeholders. The TVT Registry has important information regarding patient selection, delivery of care, science, education, and research in the field of structural valvular heart disease. This report provides an overview on current U.S. TVT practice and trends. The emphasis is on demographics, in-hospital procedural characteristics, and outcomes of patients having transcatheter aortic valve replacement (TAVR) performed at 348 U.S. centers. The TVT Registry captured 26,414 TAVR procedures as of December 31, 2014. Temporal trends between 2012 and 2013 versus 2014 were compared. Comparison of the 2 time periods reveals that TAVR patients remain elderly (mean age 82 years), with multiple comorbidities, reflected by a high mean STS predicted risk of mortality (STS PROM) for surgical valve replacement (8.34%), were highly symptomatic (New York Heart Association functional class III/IV in 82.5%), frail (slow 5-m walk test in 81.6%), and have poor self-reported health status (median baseline Kansas City Cardiomyopathy Questionnaire score of 39.1). Procedure performance is changing, with an increased use of moderate sedation (from 1.6% to 5.1%) and increase in femoral access using percutaneous techniques (66.8% in 2014). Vascular complication rates are decreasing (from 5.6% to 4.2%), whereas site-reported stroke rates remain stable at 2.2%. The TVT Registry provides important information on characteristics and outcomes of TAVR in contemporary U.S. clinical practice. It can be used to identify trends in practice and opportunities for quality improvement. Copyright © 2015 American College of Cardiology Foundation and The Society of Thoracic Surgeons. Published by Elsevier Inc. All rights reserved.

The cost of cancer registry operations: Impact of volume on cost per case for core and enhanced registry activities

PubMed Central

Subramanian, Sujha; Tangka, Florence K.L.; Beebe, Maggie Cole; Trebino, Diana; Weir, Hannah K.; Babcock, Frances

2016-01-01

Background Cancer registration data is vital for creating evidence-based policies and interventions. Quantifying the resources needed for cancer registration activities and identifying potential efficiencies are critically important to ensure sustainability of cancer registry operations. Methods Using a previously validated web-based cost assessment tool, we collected activity-based cost data and report findings using 3 years of data from 40 National Program of Cancer Registry grantees. We stratified registries by volume: low-volume included fewer than 10,000 cases, medium-volume included 10,000–50,000 cases, and high-volume included >50,000 cases. Results Low-volume cancer registries incurred an average of $93.11 to report a case (without in-kind contributions) compared with $27.70 incurred by high-volume registries. Across all registries, the highest cost per case was incurred for data collection and abstraction ($8.33), management ($6.86), and administration ($4.99). Low- and medium-volume registries have higher costs than high-volume registries for all key activities. Conclusions Some cost differences by volume can be explained by the large fixed costs required for administering and performing registration activities, but other reasons may include the quality of the data initially submitted to the registries from reporting sources such as hospitals and pathology laboratories. Automation or efficiency improvements in data collection can potentially reduce overall costs. PMID:26702880

Ethics committees in New Zealand.

PubMed

Gillett, Grant; Douglass, Alison

2012-12-01

The ethical review of research in New Zealand after the Cartwright Report of 1988 produced a major change in safeguards for and empowerment of participants in health care research. Several reforms since then have streamlined some processes but also seriously weakened some of the existing safeguards. The latest reforms, against the advice of various ethics bodies and the New Zealand Law Society, further reduced and attenuated the role of ethics committees so that New Zealand has moved from being a world leader in ethical review processes to there being serious doubt whether it is in conformity to international Conventions and codes. The latest round of reforms, seemingly driven by narrow economic aspirations, anecdote and innuendo, have occurred without any clear evidence of dysfunction in the system nor any plans for the resourcing required to improve quality of ethical review or to audit the process. It is of serious concern both to ethicists and medical lawyers in New Zealand that such hasty and poorly researched changes should have been made which threaten the hard-won gains of the Cartwright reforms.

The Enduring Legacy of New Zealand's UNCLOS Investment (Invited)

NASA Astrophysics Data System (ADS)

Wood, R.; Davy, B. W.; Herzer, R. H.; Barnes, P.; Barker, D. H.; Stagpoole, V.; Uruski, C.

2013-12-01

Data collected by surveys for New Zealand's extended continental shelf project have contributed to research into the tectonic history and resource potential of New Zealand. More than 20 scientific papers and a similar number of conference presentations and posters have used the data collected by these surveys. Data collected by these surveys have added significantly to national and international databases. Although the surveys were generally oriented to establish prolongation rather than to cross structural trends, the data have revealed the crustal, basement and sedimentary structure of many parts of the New Zealand region. In the area east of New Zealand, the data provide insight into the Cretaceous evolution of the New Zealand sector of Gondwana. Data collected southwest of New Zealand provided details about the relatively sudden transition from sea floor spreading between New Zealand and Australia in the Tasman Sea to orthogonal spreading in the Emerald Basin and the development of the modern Australian-Pacific plate boundary, including Late Tertiary motion on the Alpine Fault in the South Island, New Zealand. The data have been used to understand the formation of the New Caledonia Basin, the Norfolk Ridge and their associated structures, and they underpin the international collaboration between New Zealand, New Caledonia and Australia to promote resource exploration in the Tasman Sea. Data north of New Zealand have been used to understand the complex tectonic history of back arc spreading and island arc migration in the South Fiji Basin region. Seismic data collected along the axis of the New Caledonia Basin led to extensive hydrocarbon exploration surveys in the deepwater Taranaki region inside New Zealand's EEZ, and to an application for a hydrocarbon exploration licence in New Zealand's extended continental shelf.

Breast cancer characteristics and survival differences between Maori, Pacific and other New Zealand women included in the Quality Audit program of Breast Surgeons of Australia and New Zealand.

PubMed

Campbell, Ian; Scott, Nina; Seneviratne, Sanjeewa; Kollias, James; Walters, David; Taylor, Corey; Roder, David

2015-01-01

The Quality Audit (BQA) program of the Breast Surgeons of Australia and New Zealand (NZ) collects data on early female breast cancer and its treatment. BQA data covered approximately half all early breast cancers diagnosed in NZ during roll-out of the BQA program in 1998-2010. Coverage increased progressively to about 80% by 2008. This is the biggest NZ breast cancer database outside the NZ Cancer Registry and it includes cancer and clinical management data not collected by the Registry. We used these BQA data to compare socio-demographic and cancer characteristics and survivals by ethnicity. BQA data for 1998-2010 diagnoses were linked to NZ death records using the National Health Index (NHI) for linking. Live cases were followed up to December 31st 2010. Socio-demographic and invasive cancer characteristics and disease-specific survivals were compared by ethnicity. Five-year survivals were 87% for Maori, 84% for Pacific, 91% for other NZ cases and 90% overall. This compared with the 86% survival reported for all female breast cases covered by the NZ Cancer Registry which also included more advanced stages. Patterns of survival by clinical risk factors accorded with patterns expected from the scientific literature. Compared with Other cases, Maori and Pacific women were younger, came from more deprived areas, and had larger cancers with more ductal and fewer lobular histology types. Their cancers were also less likely to have a triple negative phenotype. More of the Pacific women had vascular invasion. Maori women were more likely to reside in areas more remote from regional cancer centres, whereas Pacific women generally lived closer to these centres than Other NZ cases. NZ BQA data indicate previously unreported differences in breast cancer biology by ethnicity. Maori and Pacific women had reduced breast cancer survival compared with Other NZ women, after adjusting for socio-demographic and cancer characteristics. The potential contributions to survival

Traditional Chinese medicine practitioners in New Zealand: differences associated with being a practitioner in New Zealand compared to China.

PubMed

Patel, Asmita; Toossi, Vahideh

2016-10-28

While New Zealand has experienced an increase in the use of traditional Chinese medicine (TCM) based acupuncture, very little is known about the practitioners who provide this type of treatment modality. Therefore, this study was designed to identify differences associated with being a TCM practitioner in New Zealand compared to China. Ten Auckland-based TCM practitioners were individually interviewed. The interview schedule comprised of questions that were designed to identify any potential differences in practising TCM in New Zealand compared to China. Data were analysed using an inductive thematic approach. The main differences in practising between the two countries were related to the role and authority that a TCM practitioner had. This in turn resulted in differences between the conditions that were treated in these two countries. Differences in patient demography were also identified between the two countries. TCM is used as a form of alternative healthcare treatment in New Zealand for non-Chinese individuals. Acupuncture is the most utilised form of TCM treatment in New Zealand, and is predominantly used for pain management purposes. TCM treatment has been utilised by individuals from a number of different ethnic groups, reflecting the ethnic diversity of the New Zealand population.

Characteristics of clinical trial websites: information distribution between ClinicalTrials.gov and 13 primary registries in the WHO registry network.

PubMed

Ogino, Daisuke; Takahashi, Kunihiko; Sato, Hajime

2014-11-05

It is well known that information about clinical trials is not easily accessible by the public. In Japan, clinical trial information can be accessed by the general public through online registries; however, many people find these registries difficult to use. To improve current clinical trial registries, we propose that combining them with clinical information phrased in lay terms would be beneficial to other interested professionals such as journalists and clinicians, as well as the general public. Therefore, this study aimed to examine the current pattern of distribution of clinical trial information from the primary World Health Organization (WHO) registries. Based on the results of this assessment, we then aimed to build and evaluate a prototype of the Japan Primary Registries Network (JPRN) portal that would be easily accessible to patients and the public, while still remaining useful for professionals. We assessed a total of 14 primary clinical trial registries listed on the WHO International Clinical Trials Registry Platform between January and February 2013. Website content was accessed and checked against a series of items that looked at usability, communication, design and accessibility of the sites. We excluded registries that were not active or were not on the approved WHO registry list at the time of our assessment. We also examined only the English versions of the websites as native-language registries may offer more functionality or different content than the English version of the same website. All registries examined had a function allowing users to search the registry data and that displayed the related information from the search, including the clinical trial registration data. However, few websites were found to be user-friendly, and there was little integration with social media. We confirmed that there are few websites providing useful clinical trial information to patients and their families. However, information gleaned from some of the more

Patient reported outcomes in hip arthroplasty registries.

PubMed

Paulsen, Aksel

2014-05-01

PROs are used increasingly in orthopedics and in joint registries, but still many aspects of use in this area have not been examined in depth. To be able to introduce PROs in the DHR in a scientific fashion, my studies were warranted; the feasibility of four often used PROs (OHS, HOOS, EQ-5D and SF-12) was examined in a registry context. Having the PROs in the target language is an absolute necessity, so I translated, cross-culturally adapted and validated a Danish language version of an often used PRO (OHS), since this PRO had no properly developed Danish language version. To minimize data loss and to maximize the data quality I validated our data capture procedure, an up to date AFP system, by comparing scannable, paper-based PROs, with manual single-key- and double-key entered data. To help further registry-PRO studies, I calculated the number of patients needed to discriminate between subgroups of age, sex, diagnosis, and prosthesis type for each of four often used PROs (OHS, HOOS, EQ-5D and SF-12), and to simplify the clinical interpretation of PRO scores and PRO change scores in PRO studies, I estimated MCII and PASS for two often used PROs (EQ-5D and HOOS). The feasibility study included 5,747 THA patients registered in the DHR, and I found only minor differences between the disease-specific and the generic PROs regarding ceiling and floor effects as well as discarded items. The HOOS, the OHS, the SF-12, and the EQ-5D are all appropriate PROs for administration in a hip registry. I found that group sizes from 51 to 1,566 were needed for subgroup analysis, depending on descriptive factors and choice of PRO. The AFP study included 200 THA patients (398 PROs, 4,875 items and 21,887 data fields), and gave excellent results provided use of highly structured questionnaires. OMR performed equally as well as manual double-key entering, and better than single-key entering. The PRO translation and validation study included 2,278 patients (and 212 patients for the test

Utility of registries for post-marketing evaluation of medicines. A survey of Swedish health care quality registries from a regulatory perspective.

PubMed

Feltelius, Nils; Gedeborg, Rolf; Holm, Lennart; Zethelius, Björn

2017-06-01

The aim of this study was to describe content and procedures in some selected Swedish health care quality registries (QRs) of relevance to regulatory decision-making. A workshop was organized with participation of seven Swedish QRs which subsequently answered a questionnaire regarding registry content on drug treatments and outcomes. Patient populations, coverage, data handling and quality control, as well as legal and ethical aspects are presented. Scientific publications from the QRs are used as a complementary measure of quality and scientific relevance. The registries under study collect clinical data of high relevance to regulatory and health technology agencies. Five out of seven registries provide information on the drug of interest. When applying external quality criteria, we found a high degree of fulfillment, although information on medication was not sufficient to answer all questions of regulatory interest. A notable strength is the option for linkage to the Prescribed Drug Registry and to information on education and socioeconomic status. Data on drugs used during hospitalization were also collected to some extent. Outcome measures collected resemble those used in relevant clinical trials. All registries collected patient-reported outcome measures. The number of publications from the registries was substantial, with studies of appropriate design, including randomized registry trials. Quality registries may provide a valuable source of post-marketing data on drug effectiveness, safety, and cost-effectiveness. Closer collaboration between registries and regulators to improve quality and usefulness of registry data could benefit both regulatory utility and value for health care providers.

Clinical disease registries in acute myocardial infarction.

PubMed

Ashrafi, Reza; Hussain, Hussain; Brisk, Robert; Boardman, Leanne; Weston, Clive

2014-06-26

Disease registries, containing systematic records of cases, have for nearly 100 years been valuable in exploring and understanding various aspects of cardiology. This is particularly true for myocardial infarction, where such registries have provided both epidemiological and clinical information that was not readily available from randomised controlled trials in highly-selected populations. Registries, whether mandated or voluntary, prospective or retrospective in their analysis, have at their core a common study population and common data definitions. In this review we highlight how registries have diversified to offer information on epidemiology, risk modelling, quality assurance/improvement and original research-through data mining, transnational comparisons and the facilitation of enrolment in, and follow-up during registry-based randomised clinical trials.

Joint Global War on Terror (GWOT) Vascular Injury Study 2

DTIC Science & Technology

2016-02-01

Iraq. This study proposes to link acute injury and clinical management information from the Joint Theater Trauma Registry (JTTR) to authentic patient...of patient based outcomes following extremity vascular injury in the wars in Afghanistan and Iraq. This study proposes to link acute injury and...deployment, training 3. ACCOMPLISHMENTS: What were the major goals of the project?  Study Phase I ( Acute and Mid-Term Data Collection): o

A brief review of vaccination coverage in immunization registries.

PubMed

Goldstein, Neal D; Maiese, Brett A

2011-01-01

Immunization registries are effective electronic tools for assessing vaccination coverage, but are only as good as the information reported to them. This review summarizes studies through August 2010 on vaccination coverage in registries and identifies key characteristics of successful registries. Based on the current state of registries, paper-based charts combined with electronic registry reporting provide the most cohesive picture of coverage. To ultimately supplant paper charts, registries must exhibit increased coverage and participation.

An Overview of New Zealand Career Development Services

ERIC Educational Resources Information Center

Furbish, Dale

2012-01-01

Career development services have existed in New Zealand since the early part of the 20th century. In many aspects, the profession has developed in New Zealand parallel to the development of career guidance and counselling in other Western countries but New Zealand also represents a unique context. In acknowledgement of the distinctive…

14 CFR 47.19 - Registry.

Code of Federal Regulations, 2014 CFR

2014-01-01

... 14 Aeronautics and Space 1 2014-01-01 2014-01-01 false Registry. 47.19 Section 47.19 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT AIRCRAFT REGISTRATION General § 47.19 Registry. Each application, request, notification, or other communication sent to the FAA...

14 CFR 47.19 - Registry.

Code of Federal Regulations, 2012 CFR

2012-01-01

... 14 Aeronautics and Space 1 2012-01-01 2012-01-01 false Registry. 47.19 Section 47.19 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT AIRCRAFT REGISTRATION General § 47.19 Registry. Each application, request, notification, or other communication sent to the FAA...

14 CFR 47.19 - Registry.

Code of Federal Regulations, 2013 CFR

2013-01-01

... 14 Aeronautics and Space 1 2013-01-01 2013-01-01 false Registry. 47.19 Section 47.19 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT AIRCRAFT REGISTRATION General § 47.19 Registry. Each application, request, notification, or other communication sent to the FAA...

14 CFR 47.19 - Registry.

Code of Federal Regulations, 2011 CFR

2011-01-01

... 14 Aeronautics and Space 1 2011-01-01 2011-01-01 false Registry. 47.19 Section 47.19 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT AIRCRAFT REGISTRATION General § 47.19 Registry. Each application, request, notification, or other communication sent to the FAA...

37 CFR 201.25 - Visual Arts Registry.

Code of Federal Regulations, 2014 CFR

2014-07-01

... 37 Patents, Trademarks, and Copyrights 1 2014-07-01 2014-07-01 false Visual Arts Registry. 201.25... OFFICE AND PROCEDURES GENERAL PROVISIONS § 201.25 Visual Arts Registry. (a) General. This section prescribes the procedures relating to the submission of Visual Arts Registry Statements by visual artists and...

37 CFR 201.25 - Visual Arts Registry.

Code of Federal Regulations, 2012 CFR

2012-07-01

... 37 Patents, Trademarks, and Copyrights 1 2012-07-01 2012-07-01 false Visual Arts Registry. 201.25... AND PROCEDURES GENERAL PROVISIONS § 201.25 Visual Arts Registry. (a) General. This section prescribes the procedures relating to the submission of Visual Arts Registry Statements by visual artists and...

37 CFR 201.25 - Visual Arts Registry.

Code of Federal Regulations, 2013 CFR

2013-07-01

... 37 Patents, Trademarks, and Copyrights 1 2013-07-01 2013-07-01 false Visual Arts Registry. 201.25... AND PROCEDURES GENERAL PROVISIONS § 201.25 Visual Arts Registry. (a) General. This section prescribes the procedures relating to the submission of Visual Arts Registry Statements by visual artists and...

37 CFR 201.25 - Visual Arts Registry.

Code of Federal Regulations, 2011 CFR

2011-07-01

... 37 Patents, Trademarks, and Copyrights 1 2011-07-01 2011-07-01 false Visual Arts Registry. 201.25... AND PROCEDURES GENERAL PROVISIONS § 201.25 Visual Arts Registry. (a) General. This section prescribes the procedures relating to the submission of Visual Arts Registry Statements by visual artists and...

37 CFR 201.25 - Visual Arts Registry.

Code of Federal Regulations, 2010 CFR

2010-07-01

... 37 Patents, Trademarks, and Copyrights 1 2010-07-01 2010-07-01 false Visual Arts Registry. 201.25... AND PROCEDURES GENERAL PROVISIONS § 201.25 Visual Arts Registry. (a) General. This section prescribes the procedures relating to the submission of Visual Arts Registry Statements by visual artists and...

Utility of registries for post-marketing evaluation of medicines. A survey of Swedish health care quality registries from a regulatory perspective

PubMed Central

Feltelius, Nils; Gedeborg, Rolf; Holm, Lennart; Zethelius, Björn

2017-01-01

Aim The aim of this study was to describe content and procedures in some selected Swedish health care quality registries (QRs) of relevance to regulatory decision-making. Methods A workshop was organized with participation of seven Swedish QRs which subsequently answered a questionnaire regarding registry content on drug treatments and outcomes. Patient populations, coverage, data handling and quality control, as well as legal and ethical aspects are presented. Scientific publications from the QRs are used as a complementary measure of quality and scientific relevance. Results The registries under study collect clinical data of high relevance to regulatory and health technology agencies. Five out of seven registries provide information on the drug of interest. When applying external quality criteria, we found a high degree of fulfillment, although information on medication was not sufficient to answer all questions of regulatory interest. A notable strength is the option for linkage to the Prescribed Drug Registry and to information on education and socioeconomic status. Data on drugs used during hospitalization were also collected to some extent. Outcome measures collected resemble those used in relevant clinical trials. All registries collected patient-reported outcome measures. The number of publications from the registries was substantial, with studies of appropriate design, including randomized registry trials. Conclusions Quality registries may provide a valuable source of post-marketing data on drug effectiveness, safety, and cost-effectiveness. Closer collaboration between registries and regulators to improve quality and usefulness of registry data could benefit both regulatory utility and value for health care providers. PMID:28276780

Considerations Before Establishing an Environmental Health Registry

PubMed Central

Muravov, Oleg I.; Sapp, James; Larson, Theodore C.; Pallos, L. Laszlo; Sanchez, Marchelle E.; Williamson, G. David; Horton, D. Kevin

2015-01-01

Public health registries can provide valuable information when health consequences of environmental exposures are uncertain or will likely take long to develop. They can also aid research on diseases that may have environmental causes that are not completely well defined. We discuss factors to consider when deciding whether to create an environmental health registry. Those factors include public health significance, purpose and outcomes, duration and scope of data collection and availability of alternative data sources, timeliness, availability of funding and administrative capabilities, and whether the establishment of a registry can adequately address specific health concerns. We also discuss difficulties, limitations, and benefits of exposure and disease registries, based on the experience of the Agency for Toxic Substances and Disease Registry. PMID:26066912

International migration and New Zealand labour markets.

PubMed

Farmer, R S

1986-06-01

"This paper seeks to assess the value of the overseas-born members of the labour force in ensuring a flexible labour supply in New Zealand since the beginning of the 1970s. Three main issues are considered: first, the role of the labour market in New Zealand's immigration policy; second, international migration trends and the labour market; and third, the evidence on migration and labour market segmentation in New Zealand." Data used are from official external migration statistics, quinquennial censuses, and recent research. The author notes that "in New Zealand immigration measures are currently being taken that emphasize that immigration continues to add to the flexibility of the labour market while uncontrolled emigration is a major cause of labour market instability." (SUMMARY IN FRE AND SPA) excerpt

The Danish Schizophrenia Registry.

PubMed

Baandrup, Lone; Cerqueira, Charlotte; Haller, Lea; Korshøj, Lene; Voldsgaard, Inge; Nordentoft, Merete

2016-01-01

To systematically monitor and improve the quality of treatment and care of patients with schizophrenia in Denmark. In addition, the database is accessible as a resource for research. Patients diagnosed with schizophrenia and receiving mental health care in psychiatric hospitals or outpatient clinics. During the first year after the diagnosis, patients are classified as incident patients, and after this period as prevalent patients. The registry currently contains 21 clinical quality measures in relation to the following domains: diagnostic evaluation, antipsychotic treatment including adverse reactions, cardiovascular risk factors including laboratory values, family intervention, psychoeducation, postdischarge mental health care, assessment of suicide risk in relation to discharge, and assessment of global functioning. The recorded data are available electronically for the reporting clinicians and responsible administrative personnel, and they are updated monthly. The registry publishes the national and regional results of all included quality measures in the annual audit reports. External researchers may obtain access to the data for use in specific research projects by applying to the steering committee. The Danish Schizophrenia Registry represents a valuable source of informative data to monitor and improve the quality of care of patients with schizophrenia in Denmark. However, continuous resources and time devoted is necessary to maintain the integrity of the registry and the validity of the data.

The management of Graves' disease in New Zealand 2014.

PubMed

Cox, Stephanie C; Tamatea, Jade Au; Conaglen, John V; Elston, Marianne S

2016-06-10

Treatment options for Graves' disease (GD), namely anti-thyroid drugs (ATD), surgery or radioiodine (RAI), have not changed over the past two decades. There is no 'gold-standard' treatment for GD. To assess whether the management of GD in New Zealand has changed since the previous 1991 New Zealand survey and compare current management with that of contemporary international studies. We conducted an online survey of New Zealand physicians currently practising internal medicine, diabetes and/or endocrinology, using the cases and questions from the original European and 1991 New Zealand studies. The first-line use of RAI was 5.5%, compared to 41% in the 1991 New Zealand survey. This corresponded to an increase in ATD use, while the rates of surgery as a first-line treatment have remained static over time. New Zealand physicians use technetium scanning for diagnosis, whereas ultrasound and radioiodine uptake were the most commonly selected investigations by European and North American physicians, respectively. The pattern of ATD use in pregnancy was similar to international practice. Treatment of GD in New Zealand has shifted away from the use of RAI as first line treatment. There are significant differences in the investigation and treatment of Grave's disease between New Zealand, Europe and North America.

Artificial Nutritional Support Registries: systematic review.

PubMed

Castelló-Botía, I; Wanden-Berghe, C; Sanz-Valero, J

2009-01-01

The nutritional registries are data bases through which we obtain the information to understand the nutrition of populations. Several main nutrition societies of the world have these types of registries, outstanding the NADYA (Home artificial and Ambulatory nutrition) group in Spain. The object of this study is to determine by means of a systematic review, the existent scientific production in the international data bases referred to nutritional support registries. Descriptive transversal study of the results of a critical bibliographic research done in the bioscience data bases: MEDLINE, EMBASE, The Cochrane Library, ISI (Web of Sciences), LILACS, CINHAL. A total of 20 original articles related to nutritional registries were found and recovered. Eleven registries of eight countries were identified: Australia, Germany, Italy, Japan, Spain, Sweden, United Status and United Kingdom. The Price Index was of 65% and all the articles were published in the last 20 years. The Price Index highlights the innovativeness of this practice. The articles related to nutritional support are heterogeneous with respect to data and population, which exposes this as a limitation for a combined analysis.

The National Mental Health Registry (NMHR).

PubMed

Aziz, A A; Salina, A A; Abdul Kadir, A B; Badiah, Y; Cheah, Y C; Nor Hayati, A; Ruzanna, Z Z; Sharifah Suziah, S M; Chee, K Y

2008-09-01

The National Mental Health Registry (NMHR) collects information about patients with mental disorder in Malaysia. This information allows us to estimate the incidence of selected mental disorders, and to evaluate risk factors and treatment in the country. The National Mental Health Registry (NMHR) presented its first report in 2004, a year after its establishment. The report focused on schizophrenia as a pioneer project for the National Mental Health Registry. The development of the registry has progressed with data collected from government-based facilities, the academia and the private sector. The 2003-2005 report was recently published and distributed. Since then the registry has progressed to include suicides and other mental illnesses such as depression. The NMHR Report 2003-2005 provides detailed information about the profile of persons with Schizophrenia who presented for the first time to various psychiatry and mental health providers throughout Malaysia. More detailed description regarding pharmacotherapy is reported and few cross tabulations done in an effort to provide better understanding and more clinically meaningful reports.

Evaluation of role 2 (R2) medical resources in the Afghanistan combat theater: Initial review of the joint trauma system R2 registry.

PubMed

Mann-Salinas, Elizabeth A; Le, Tuan D; Shackelford, Stacy A; Bailey, Jeffrey A; Stockinger, Zsolt T; Spott, Mary Ann; Wirt, Michael D; Rickard, Rory; Lane, Ian B; Hodgetts, Timothy; Cardin, Sylvain; Remick, Kyle N; Gross, Kirby R

2016-11-01

A Role 2 registry (R2R) was developed in 2008 by the US Joint Trauma System (JTS). The purpose of this project was to undertake a preliminary review of the R2R to understand combat trauma epidemiology and related interventions at these facilities to guide training and optimal use of forward surgical capability in the future. A retrospective review of available JTS R2R records; the registry is a convenience sample entered voluntarily by members of the R2 units. Patients were classified according to basic demographics, affiliation, region where treatment was provided, mechanism of injury, type of injury, time and method of transport from point of injury (POI) to R2 facility, interventions at R2, and survival. Analysis included trauma patients aged ≥18 years or older wounded in year 2008 to 2014, and treated in Afghanistan. A total of 15,404 patients wounded and treated in R2 were included in the R2R from February 2008 to September 2014; 12,849 patients met inclusion criteria. The predominant patient affiliations included US Forces, 4,676 (36.4%); Afghan Forces, 4,549 (35.4%); and Afghan civilians, 2,178 (17.0%). Overall, battle injuries predominated (9,792 [76.2%]). Type of injury included penetrating, 7,665 (59.7%); blunt, 4,026 (31.3%); and other, 633 (4.9%). Primary mechanism of injury included explosion, 5,320 (41.4%); gunshot wounds, 3,082 (24.0%); and crash, 1,209 (9.4%). Of 12,849 patients who arrived at R2, 167 (1.3%) were dead; of 12,682 patients who were alive upon arrival, 342 (2.7%) died at R2. This evaluation of the R2R describes the patient profiles of and common injuries treated in a sample of R2 facilities in Afghanistan. Ongoing and detailed analysis of R2R information may provide evidence-based guidance to military planners and medical leaders to best prepare teams and allocate R2 resources in future operations. Given the limitations of the data set, conclusions must be interpreted in context of other available data and analyses, not in isolation

Sustaining Adventure in New Zealand Outdoor Education: Perspectives from Renowned New Zealand Outdoor Adventurers on the Contested Cultural Understanding of Adventure

ERIC Educational Resources Information Center

Kane, Maurice; Tucker, Hazel

2007-01-01

One of the foundations of New Zealand's representation of itself to the world has been as a premier place of adventure. New Zealanders who have gained world recognition in outdoor leisure pursuits are used to promote this adventurous depiction of New Zealand. They are the focus of and contribute to the discourse which guides the New Zealand…

Early Childhood Services in New Zealand.

ERIC Educational Resources Information Center

Oborn, Glennie

2002-01-01

Describes the types and characteristics of New Zealand early childhood education services. Specific areas addressed include: (1) Te Whaariki, the New Zealand early childhood curriculum; (2) great outdoors as a feature of early education; (3) education and care centers; (4) kindergartens and playcenters; and (5) Te Kohanga Reo, Maori language and…

Design, implementation and practice of JBEI-ICE: an open source biological part registry platform and tools.

PubMed

Ham, Timothy S; Dmytriv, Zinovii; Plahar, Hector; Chen, Joanna; Hillson, Nathan J; Keasling, Jay D

2012-10-01

The Joint BioEnergy Institute Inventory of Composable Elements (JBEI-ICEs) is an open source registry platform for managing information about biological parts. It is capable of recording information about 'legacy' parts, such as plasmids, microbial host strains and Arabidopsis seeds, as well as DNA parts in various assembly standards. ICE is built on the idea of a web of registries and thus provides strong support for distributed interconnected use. The information deposited in an ICE installation instance is accessible both via a web browser and through the web application programming interfaces, which allows automated access to parts via third-party programs. JBEI-ICE includes several useful web browser-based graphical applications for sequence annotation, manipulation and analysis that are also open source. As with open source software, users are encouraged to install, use and customize JBEI-ICE and its components for their particular purposes. As a web application programming interface, ICE provides well-developed parts storage functionality for other synthetic biology software projects. A public instance is available at public-registry.jbei.org, where users can try out features, upload parts or simply use it for their projects. The ICE software suite is available via Google Code, a hosting site for community-driven open source projects.

Occupational Disease Registries-Characteristics and Experiences.

PubMed

Davoodi, Somayeh; Haghighi, Khosro Sadeghniat; Kalhori, Sharareh Rostam Niakan; Hosseini, Narges Shams; Mohammadzadeh, Zeinab; Safdari, Reza

2017-06-01

Due to growth of occupational diseases and also increase of public awareness about their consequences, attention to various aspects of diseases and improve occupational health and safety has found great importance. Therefore, there is the need for appropriate information management tools such as registries in order to recognitions of diseases patterns and then making decision about prevention, early detection and treatment of them. These registries have different characteristics in various countries according to their occupational health priorities. Aim of this study is evaluate dimensions of occupational diseases registries including objectives, data sources, responsible institutions, minimum data set, classification systems and process of registration in different countries. In this study, the papers were searched using the MEDLINE (PubMed) Google scholar, Scopus, ProQuest and Google. The search was done based on keyword in English for all motor engines including "occupational disease", "work related disease", "surveillance", "reporting", "registration system" and "registry" combined with name of the countries including all subheadings. After categorizing search findings in tables, results were compared with each other. Important aspects of the registries studied in ten countries including Finland, France, United Kingdom, Australia, Czech Republic, Malaysia, United States, Singapore, Russia and Turkey. The results show that surveyed countries have statistical, treatment and prevention objectives. Data sources in almost the rest of registries were physicians and employers. The minimum data sets in most of them consist of information about patient, disease, occupation and employer. Some of countries have special occupational related classification systems for themselves and some of them apply international classification systems such as ICD-10. Finally, the process of registration system was different in countries. Because occupational diseases are often

The Pediatric Emergency Care Applied Research Network Registry: A Multicenter Electronic Health Record Registry of Pediatric Emergency Care.

PubMed

Deakyne Davies, Sara J; Grundmeier, Robert W; Campos, Diego A; Hayes, Katie L; Bell, Jamie; Alessandrini, Evaline A; Bajaj, Lalit; Chamberlain, James M; Gorelick, Marc H; Enriquez, Rene; Casper, T Charles; Scheid, Beth; Kittick, Marlena; Dean, J Michael; Alpern, Elizabeth R

2018-04-01

 Electronic health record (EHR)-based registries allow for robust data to be derived directly from the patient clinical record and can provide important information about processes of care delivery and patient health outcomes.  A data dictionary, and subsequent data model, were developed describing EHR data sources to include all processes of care within the emergency department (ED). ED visit data were deidentified and XML files were created and submitted to a central data coordinating center for inclusion in the registry. Automated data quality control occurred prior to submission through an application created for this project. Data quality reports were created for manual data quality review.  The Pediatric Emergency Care Applied Research Network (PECARN) Registry, representing four hospital systems and seven EDs, demonstrates that ED data from disparate health systems and EHR vendors can be harmonized for use in a single registry with a common data model. The current PECARN Registry represents data from 2,019,461 pediatric ED visits, 894,503 distinct patients, more than 12.5 million narrative reports, and 12,469,754 laboratory tests and continues to accrue data monthly.  The Registry is a robust harmonized clinical registry that includes data from diverse patients, sites, and EHR vendors derived via data extraction, deidentification, and secure submission to a central data coordinating center. The data provided may be used for benchmarking, clinical quality improvement, and comparative effectiveness research. Schattauer.

The Cost Efficiency New Zealand's Polytechnics

ERIC Educational Resources Information Center

Abbott, Malcolm; Doucouliagos, Hristos

2004-01-01

In New Zealand the most important institutions that are responsible for the delivery of vocational education and training programs are the government owned and operated tertiary education institutions known as polytechnics. The New Zealand polytechnics deliver programs at the certificate, diploma and degree level. During the course of the 1990s,…

The CERTAIN Registry: a novel, web-based registry and research platform for pediatric renal transplantation in Europe.

PubMed

Plotnicki, L; Kohl, C D; Höcker, B; Krupka, K; Rahmel, A; Pape, L; Hoyer, P; Marks, S D; Webb, N J A; Söylemezoglu, O; Topaloglu, R; Szabo, A J; Seeman, T; Marlies Cornelissen, E A; Knops, N; Grenda, R; Tönshoff, B

2013-05-01

The results of pediatric renal transplantation have improved markedly in the last decade. However, a number of relevant clinical problems remain, such as organ damage caused by chronic rejection, long-term toxicity of immunosuppressive therapy, difficulty in developing tolerance-inducing protocols, secondary cardiovascular comorbidity, post-transplantation lymphoproliferative disease, suboptimal longitudinal growth, quality of life, adherence to immunosuppressive medication, and structured transition programs to adult care. These unmet clinical needs require intense collaborative and interdisciplinary clinical research. We recently founded the Cooperative European Paediatric Renal TransplAnt INitiative (CERTAIN; www.certain-registry.eu) as a research network and platform built on a novel, web-based registry. The registry's dataset provides essential information on generic kidney transplantation-related topics and also captures pediatric-specific topics, such as growth, physical and psychosocial development, and adherence. Due to its flexibility the system can be used as follows: (1) as a registry capturing a minimal or an extended dataset; (2) as a center and/or country-specific transplantation database; or (3) as a patient-specific electronic transplantation chart. The data can be exported directly from the CERTAIN web application into statistical software packages for scientific analyses. The rights regarding data ownership, evaluation, and publications are regulated in the registry's rules of procedure. Data quality is ensured by automatic software validation and a manual data review process. To avoid redundant data entry, CERTAIN has established interfaces for data change with Eurotransplant, the Collaborative Transplant Study (CTS), and the registry of the European Society of Pediatric Nephrology (ESPN) and European Renal Association - European Dialysis and Transplant Association (ERA-EDTA) (ESPN/ERA-EDTA registry). CERTAIN fulfils all regulatory and ethical

Outcomes following revision surgery performed for adverse reactions to metal debris in non-metal-on-metal hip arthroplasty patients: Analysis of 185 revisions from the National Joint Registry for England and Wales.

PubMed

Matharu, G S; Judge, A; Murray, D W; Pandit, H G

2017-07-01

Few studies have assessed outcomes following non-metal-on-metal hip arthroplasty (non-MoMHA) revision surgery performed for adverse reactions to metal debris (ARMD). We assessed outcomes following non-MoMHA revision surgery performed for ARMD, and identified predictors of re-revision. We performed a retrospective observational study using data from the National Joint Registry for England and Wales. All non-MoMHAs undergoing revision surgery for ARMD between 2008 and 2014 were included (185 hips in 185 patients). Outcome measures following ARMD revision were intra-operative complications, mortality and re-revision surgery. Predictors of re-revision were identified using Cox regression. Intra-operative complications occurred in 6.0% (n = 11) of the 185 cases. The cumulative four-year patient survival rate was 98.2% (95% CI 92.9 to 99.5). Re-revision surgery was performed in 13.5% (n = 25) of hips at a mean time of 1.2 years (0.1 to 3.1 years) following ARMD revision. Infection (32%; n = 8), dislocation/subluxation (24%; n = 6), and aseptic loosening (24%; n = 6) were the most common re-revision indications. The cumulative four-year implant survival rate was 83.8% (95% CI 76.7 to 88.9). Multivariable analysis identified three predictors of re-revision: multiple revision indications (hazard ratio (HR) = 2.78; 95% CI 1.03 to 7.49; p = 0.043); selective component revisions (HR = 5.76; 95% CI 1.28 to 25.9; p = 0.022); and ceramic-on-polyethylene revision bearings (HR = 3.08; 95% CI 1.01 to 9.36; p = 0.047). Non-MoMHAs revised for ARMD have a high short-term risk of re-revision, with important predictors of future re-revision including selective component revision, multiple revision indications, and ceramic-on-polyethylene revision bearings. Our findings may help counsel patients about the risks of ARMD revision, and guide reconstructive decisions. Future studies attempting to validate the predictors identified should also assess the effects of implant design (metallurgy

The Danish Schizophrenia Registry

PubMed Central

Baandrup, Lone; Cerqueira, Charlotte; Haller, Lea; Korshøj, Lene; Voldsgaard, Inge; Nordentoft, Merete

2016-01-01

Aim of database To systematically monitor and improve the quality of treatment and care of patients with schizophrenia in Denmark. In addition, the database is accessible as a resource for research. Study population Patients diagnosed with schizophrenia and receiving mental health care in psychiatric hospitals or outpatient clinics. During the first year after the diagnosis, patients are classified as incident patients, and after this period as prevalent patients. Main variables The registry currently contains 21 clinical quality measures in relation to the following domains: diagnostic evaluation, antipsychotic treatment including adverse reactions, cardiovascular risk factors including laboratory values, family intervention, psychoeducation, postdischarge mental health care, assessment of suicide risk in relation to discharge, and assessment of global functioning. Descriptive data The recorded data are available electronically for the reporting clinicians and responsible administrative personnel, and they are updated monthly. The registry publishes the national and regional results of all included quality measures in the annual audit reports. External researchers may obtain access to the data for use in specific research projects by applying to the steering committee. Conclusion The Danish Schizophrenia Registry represents a valuable source of informative data to monitor and improve the quality of care of patients with schizophrenia in Denmark. However, continuous resources and time devoted is necessary to maintain the integrity of the registry and the validity of the data. PMID:27843348

California's coast redwood in New Zealand

Treesearch

Tom Gaman

2012-01-01

New Zealanders are making a significant effort to develop their forest industry to benefit from rapid growth exhibited by Sequoia sempervirens on both the North Island and South Island. US and New Zealand forest products companies have established redwood plantations in the past decade, and have found that microclimate, site preparation, soil chemistry, fertilization...

Predictors of baseline peritoneal transport status in Australian and New Zealand peritoneal dialysis patients.

PubMed

Rumpsfeld, Markus; McDonald, Stephen P; Purdie, David M; Collins, John; Johnson, David W

2004-03-01

Factors that predict peritoneal transport status in peritoneal dialysis (PD) patients are poorly understood. The aim of the present study is to determine these factors in Australian and New Zealand incident PD patients. The study included all patients on the Australian and New Zealand Dialysis and Transplant Registry who started PD therapy between April 1, 1991, and March 31, 2002, and underwent a peritoneal equilibration test (PET) within the first 6 months. Predictors of peritoneal transport category and dialysate-plasma creatinine ratio at 4 hours (D-P Cr 4h) were assessed by multivariate ordinal logistic regression and multiple linear regression, respectively. A total of 3,188 patients were studied. Mean D-P Cr 4h was 0.69 +/- 0.13. High transport status was associated with older age (adjusted odds ratio [OR], 1.08 for each 10 years; 95% confidence interval [CI], 1.03 to 1.13), Maori and Pacific Islander racial origin (OR, 1.48; 95% CI, 1.13 to 1.94), and normal body mass index (BMI; < 18.5 kg/m2: OR, 0.90; 95% CI, 0.65 to 1.24; BMI of 18.5 to 25 kg/m2: OR, 1 [reference]; BMI of 25 to 30 kg/m2: OR, 0.81; 95% CI, 0.70 to 0.95; BMI > 30 kg/m2: OR, 0.71; 95% CI, 0.58 to 0.86), but was not independently predicted by sex, diabetes, other comorbid diseases, smoking, previous hemodialysis therapy or transplantation, or residual renal function. Similar results were found when peritoneal permeability was modeled as a continuous variable (D-P Cr 4h). In Australian and New Zealand PD patients, higher peritoneal transport status is independently associated with racial origin, older age, and lower BMI. The diversity of peritoneal transport characteristics in different ethnic populations suggests that additional validation of PET measurements in various racial groups and study of their relationship to patient outcomes are warranted.

Clinical patient registry recruitment and retention: a survey of patients in two chronic disease registries.

PubMed

Solomon, Daniel H; Shadick, Nancy A; Weinblatt, Michael E; Frits, Michelle; Iannaccone, Christine; Zak, Agnes; Korzenik, Joshua R

2017-04-17

The collection of routine clinical data in the setting of research registries can serve an important role in understanding real world care. However, relatively little is known about the patient experience in registries, motivating us to survey patients enrolled in two chronic disease registries. We conducted similar surveys in two disease-based registries based at one academic medical center in the US. One group of patients with rheumatoid arthritis (RA) had been enrolled in a registry, and we focused on retention factors. In a second group of patients with inflammatory bowel disease (IBD) recently enrolled or considering enrollment, we examined factors that would influence their enrollment and willingness to answer frequent questionnaires and give biospecimens. The surveys were analyzed using descriptive statistics and the two cohorts were compared using nonparametric and chi-square tests. We received 150 (50%) completed surveys from RA and 169 (63%) from IBD patients. Mean age of subjects was 62 years in RA and 43 in IBD with more women respondents with RA (83%) than IBD (62%). The two groups described very similar factors as the top three motivations for participation: desire to help others, desire to improve care of own disease, and ease of volunteering. Preferred methods of surveying included mail, e-mail, but telephone was not favored; age was an important correlate of this preference. Respondents preferred surveys either every 1-3 months (28.7% RA and 55.0% IBD) or every 4-6 months (50.7% RA and 29.0% IBD). They differed in the preference for payment for answering surveys with 68.0% with RA answering that no payment was necessary but only 36.1% with IBD felt similarly. Patients engaged in clinical registries demonstrate a high level of commitment to improve care and many report a willingness to answer questions relatively frequently.

James Henry Marriott: New Zealand's first professional telescope-maker

NASA Astrophysics Data System (ADS)

Orchiston, Wayne; Romick, Carl; Brown, Pendreigh.

2015-11-01

James Henry Marriott was born in London in 1799 and trained as an optician and scientific instrument- maker. In 1842 he emigrated to New Zealand and in January 1843 settled in the newly-established town of Wellington. He was New Zealand's first professional telescope-maker, but we have only been able to locate one telescope made by him while in New Zealand, a brass 1-draw marine telescope with a 44-mm objective, which was manufactured in 1844. In 2004 this marine telescope was purchased in Hawaii by the second author of this paper. In this paper we provide biographical information about Marriott, describe his 1844 marine telescope and speculate on its provenance. We conclude that although he may have been New Zealand's first professional telescope-maker Marriot actually made very few telescopes or other scientific instruments. As such, rather than being recognised as a pioneer of telescope-making in New Zealand he should be remembered as the founder of New Zealand theatre.

Rocker-sole footwear versus prefabricated foot orthoses for the treatment of pain associated with first metatarsophalangeal joint osteoarthritis: study protocol for a randomised trial

PubMed Central

2014-01-01

-sole footwear and individualised prefabricated foot orthoses in reducing pain associated with osteoarthritis of the first metatarsophalangeal joint, and only the third randomised trial ever conducted for this condition. The study has been pragmatically designed to ensure that the findings can be implemented into clinical practice if the interventions are found to be effective, and the baseline biomechanical analysis will provide useful insights into their mechanism of action. Trial registration Australian New Zealand Clinical Trials Registry: ACTRN12613001245785 PMID:24629181

Marine biodiversity of Aotearoa New Zealand.

PubMed

Gordon, Dennis P; Beaumont, Jennifer; MacDiarmid, Alison; Robertson, Donald A; Ahyong, Shane T

2010-08-02

The marine-biodiversity assessment of New Zealand (Aotearoa as known to Māori) is confined to the 200 nautical-mile boundary of the Exclusive Economic Zone, which, at 4.2 million km(2), is one of the largest in the world. It spans 30 degrees of latitude and includes a high diversity of seafloor relief, including a trench 10 km deep. Much of this region remains unexplored biologically, especially the 50% of the EEZ deeper than 2,000 m. Knowledge of the marine biota is based on more than 200 years of marine exploration in the region. The major oceanographic data repository is the National Institute of Water and Atmospheric Research (NIWA), which is involved in several Census of Marine Life field projects and is the location of the Southwestern Pacific Regional OBIS Node; NIWA is also data manager and custodian for fisheries research data owned by the Ministry of Fisheries. Related data sources cover alien species, environmental measures, and historical information. Museum collections in New Zealand hold more than 800,000 registered lots representing several million specimens. During the past decade, 220 taxonomic specialists (85 marine) from 18 countries have been engaged in a project to review New Zealand's entire biodiversity. The above-mentioned marine information sources, published literature, and reports were scrutinized to give the results summarized here for the first time (current to 2010), including data on endemism and invasive species. There are 17,135 living species in the EEZ. This diversity includes 4,315 known undescribed species in collections. Species diversity for the most intensively studied phylum-level taxa (Porifera, Cnidaria, Mollusca, Brachiopoda, Bryozoa, Kinorhyncha, Echinodermata, Chordata) is more or less equivalent to that in the ERMS (European Register of Marine Species) region, which is 5.5 times larger in area than the New Zealand EEZ. The implication is that, when all other New Zealand phyla are equally well studied, total marine

Marine Biodiversity of Aotearoa New Zealand

PubMed Central

Gordon, Dennis P.; Beaumont, Jennifer; MacDiarmid, Alison; Robertson, Donald A.; Ahyong, Shane T.

2010-01-01

The marine-biodiversity assessment of New Zealand (Aotearoa as known to Māori) is confined to the 200 nautical-mile boundary of the Exclusive Economic Zone, which, at 4.2 million km2, is one of the largest in the world. It spans 30° of latitude and includes a high diversity of seafloor relief, including a trench 10 km deep. Much of this region remains unexplored biologically, especially the 50% of the EEZ deeper than 2,000 m. Knowledge of the marine biota is based on more than 200 years of marine exploration in the region. The major oceanographic data repository is the National Institute of Water and Atmospheric Research (NIWA), which is involved in several Census of Marine Life field projects and is the location of the Southwestern Pacific Regional OBIS Node; NIWA is also data manager and custodian for fisheries research data owned by the Ministry of Fisheries. Related data sources cover alien species, environmental measures, and historical information. Museum collections in New Zealand hold more than 800,000 registered lots representing several million specimens. During the past decade, 220 taxonomic specialists (85 marine) from 18 countries have been engaged in a project to review New Zealand's entire biodiversity. The above-mentioned marine information sources, published literature, and reports were scrutinized to give the results summarized here for the first time (current to 2010), including data on endemism and invasive species. There are 17,135 living species in the EEZ. This diversity includes 4,315 known undescribed species in collections. Species diversity for the most intensively studied phylum-level taxa (Porifera, Cnidaria, Mollusca, Brachiopoda, Bryozoa, Kinorhyncha, Echinodermata, Chordata) is more or less equivalent to that in the ERMS (European Register of Marine Species) region, which is 5.5 times larger in area than the New Zealand EEZ. The implication is that, when all other New Zealand phyla are equally well studied, total marine diversity

7 CFR 319.56-32 - Peppers from New Zealand.

Code of Federal Regulations, 2010 CFR

2010-01-01

... 7 Agriculture 5 2010-01-01 2010-01-01 false Peppers from New Zealand. 319.56-32 Section 319.56-32... SERVICE, DEPARTMENT OF AGRICULTURE FOREIGN QUARANTINE NOTICES Fruits and Vegetables § 319.56-32 Peppers from New Zealand. Peppers (fruit) (Capsicum spp.) from New Zealand may be imported into the United...

Malaysian Twin Registry.

PubMed

Jahanfar, Shayesteh; Jaffar, Sharifah Halimah

2013-02-01

The National Malaysian Twin Registry was established in Royal College of Medicine, Perak, University Kuala Lumpur (UniKL) in June 2008 through a grant provided by UniKL. The general objective is to facilitate scientific research involving participation of twins and their family members in order to answer questions of health and wellbeing relevant to Malaysians. Recruitment is done via mass media, poster, and pamphlets. We now have 266 adult and 204 children twins registered. Several research projects including reproductive health study of twins and the role of co-bedding on growth and development of children are carried out. Registry holds annual activities for twins and seeks to provide health-related information for twins. We seek international collaboration.

Strategic perspective: Nuclear issues in the New Zealand media

DOE Office of Scientific and Technical Information (OSTI.GOV)

Fridriksson, L.N.

New Zealand's anti-nuclear policy drew international attention and threw the nation into a foreign policy crisis with the United States over the trilateral mutual security pact ANZUS. After more than a year of diminished intelligence and military cooperation, New Zealand was expelled from the alliance. This study involved a content analysis of coverage of these events and other nuclear issues in selected newspapers of New Zealand and the United States. Research points to the roles of the media as a critical one in the overall relations among countries. Through their frequent use of official government sources, the media tend tomore » uphold the government line or status quo with regard to foreign affairs. This study sought to identify the nuclear issues covered in the New Zealand and US media, the characteristics of that coverage, the sources of that coverage and how coverage varied during changing US-New Zealand relations. The official frame prevailed in coverage of nuclear issues. In the New Zealand and US newspapers under study, most sources of nuclear issue news were government officials. This research also found that most coverage of nuclear issues in the New Zealand media was related to some aspect of US interests, and that coverage of New Zealand's policy in the US media was covered most often when related to the United States. Nuclear issue coverage was most often not crisis-oriented in New Zealand and US newspapers, but coverage of all nuclear issues increased dramatically during the period of the ANZUS policy crisis. This study found a number of changes in nuclear issue coverage in the New Zealand media after the policy crisis was resolved. Among those changes were a tendency to focus less on economic and trade effects of the anti-nuclear policy, a tendency to focus more on ties with other South Pacific nations, use more sources from those countries, and a tendency to focus less on the moral and ethical position of the country.« less

[Current situation of acupuncture in New Zealand].

PubMed

Li, Xiaoji; Hu, Youping

2017-04-12

The beginning of TCM acupuncture in New Zealand dates back to the middle of 19th century. After self-improvement for more than 100 years, TCM acupuncture has gained a considerable development. From the perspective of history and current situation, the development of acupuncture in New Zealand was elaborated in this article; in addition, the sustainable development of acupuncture was discussed from the perspective of education and training. In New Zealand, the TCM acupuncture and dry needling have played a dominant role in acupuncture treatments, which are practiced by TCM practitioners and physical therapists. The TCM acupuncture is widely applied in department of internal medicine, surgery, gynecology, and pediatrics, etc., while the dry needling is li-mited for traumatology and pain disorder. Therefore, including TCM acupuncture into the public medical and educational system in New Zealand should be an essential policy of Ministry of Health to provide welfare for the people.

Frequent Questions about the Manifest Registry

EPA Pesticide Factsheets

FAQs Including Can I submit multiple form samples to the EPA Registry for approval? Must I submit a continuation sheet sample to the Manifest Registry under section 262.21(d)? Can I typeset the form after I am approved to print the manifest?

Comparison of the management and in-hospital outcomes of acute coronary syndrome patients in Australia and New Zealand: results from the binational SNAPSHOT acute coronary syndrome 2012 audit.

PubMed

Ellis, C; Hammett, C; Ranasinghe, I; French, J; Briffa, T; Devlin, G; Elliott, J; Lefkovitz, J; Aliprandi-Costa, B; Astley, C; Redfern, J; Howell, T; Carr, B; Lintern, K; Bloomer, S; Farshid, A; Matsis, P; Hamer, A; Williams, M; Troughton, R; Horsfall, M; Hyun, K; Gamble, G; White, H; Brieger, D; Chew, D

2015-05-01

We aimed to assess differences in patient management, and outcomes, of Australian and New Zealand patients admitted with a suspected or confirmed acute coronary syndrome (ACS). We used comprehensive data from the binational Australia and New Zealand ACS 'SNAPSHOT' audit, acquired on individual patients admitted between 00.00 h on 14 May 2012 to 24.00 h on 27 May 2012. There were 4387 patient admissions, 3381 (77%) in Australia and 1006 (23%) in New Zealand; Australian patients were slightly younger (67 vs 69 years, P = 0.0044). Of the 2356 patients with confirmed ACS, Australian patients were at a lower cardiovascular risk with a lower median Global Registry Acute Coronary Events score (147 vs 154 P = 0.0008), but as likely to receive an invasive coronary angiogram (58% vs 54%, P = 0.082), or revascularisation with percutaneous coronary intervention (32% vs 31%, P = 0.92) or coronary artery bypass graft surgery (7.0% vs 5.6%, P = 0.32). Of the 1937 non-segment elevation myocardial infarction/unstable angina pectoris (NSTEMI/UAP) patients, Australian patients had a shorter time to angiography (46 h vs 67 h, P < 0.0001). However, at discharge, Australian NSTEMI/UAP survivors were less likely to receive aspirin (84% vs 89%, P = 0.0079, a second anti-platelet agent (57% vs 63%, P = 0.050) or a beta blocker (67% vs 77%, P = 0.0002). In-hospital death rates were not different (2.7% vs 3.2%, P = 0.55) between Australia and New Zealand. Overall more similarities were seen, than differences, in the management of suspected or confirmed ACS patients between Australia and New Zealand. However, in several management areas, both countries could improve the service delivery to this high-risk patient group. © 2015 Royal Australasian College of Physicians.

The New Zealand Curriculum: Emergent Insights and Complex Renderings

ERIC Educational Resources Information Center

Ovens, Alan

2010-01-01

The launch of New Zealand Curriculum (Ministry of Education, 2007) brings into question the future of the reforms introduced in the 1999 curriculum, Health and Physical Education in the New Zealand National Curriculum (Ministry of Education, 1999). The aim of this paper is to critique recent physical education curriculum policy in New Zealand and…

Functional requirements regarding medical registries--preliminary results.

PubMed

Oberbichler, Stefan; Hörbst, Alexander

2013-01-01

The term medical registry is used to reference tools and processes to support clinical or epidemiologic research or provide a data basis for decisions regarding health care policies. In spite of this wide range of applications the term registry and the functional requirements which a registry should support are not clearly defined. This work presents preliminary results of a literature review to discover functional requirements which form a registry. To extract these requirements a set of peer reviewed articles was collected. These set of articles was screened by using methods from qualitative research. Up to now most discovered functional requirements focus on data quality (e. g. prevent transcription error by conducting automatic domain checks).

The New Zealand Tsunami Database: historical and modern records

NASA Astrophysics Data System (ADS)

Barberopoulou, A.; Downes, G. L.; Cochran, U. A.; Clark, K.; Scheele, F.

2016-12-01

A database of historical (pre-instrumental) and modern (instrumentally recorded)tsunamis that have impacted or been observed in New Zealand has been compiled andpublished online. New Zealand's tectonic setting, astride an obliquely convergenttectonic boundary on the Pacific Rim, means that it is vulnerable to local, regional andcircum-Pacific tsunamis. Despite New Zealand's comparatively short written historicalrecord of c. 200 years there is a wealth of information about the impact of past tsunamis.The New Zealand Tsunami Database currently has 800+ entries that describe >50 highvaliditytsunamis. Sources of historical information include witness reports recorded indiaries, notes, newspapers, books, and photographs. Information on recent events comesfrom tide gauges and other instrumental recordings such as DART® buoys, and media ofgreater variety, for example, video and online surveys. The New Zealand TsunamiDatabase is an ongoing project with information added as further historical records cometo light. Modern tsunamis are also added to the database once the relevant data for anevent has been collated and edited. This paper briefly overviews the procedures and toolsused in the recording and analysis of New Zealand's historical tsunamis, with emphasison database content.

The effects of neuromuscular exercise on medial knee joint load post-arthroscopic partial medial meniscectomy: 'SCOPEX', a randomised control trial protocol.

PubMed

Hall, Michelle; Hinman, Rana S; Wrigley, Tim V; Roos, Ewa M; Hodges, Paul W; Staples, Margaret; Bennell, Kim L

2012-11-27

joint load during various tasks in people with a partial medial meniscectomy. If shown to reduce the knee adduction moment, neuromuscular exercise has the potential to prevent the onset of osteoarthritis or slow its progression in those with early disease. Australian New Zealand Clinical Trials Registry reference: ACTRN12612000542897.

Clinical Experience with Telavancin for the Treatment of Patients with Bone and Joint Infections: Preliminary Results from the Telavancin Observational Use Registry (TOUR™)

PubMed Central

Sims, Charles; Bressler, Adam; Lacy, Melinda; Osmukhina, Anna; Castaneda-Ruiz, Bibiana

2017-01-01

Abstract Background Telavancin (TLV) is a lipoglycopeptide antibacterial active against a wide range of Gram-positive pathogens, including methicillin-sensitive and -resistant Staphylococcus aureus (MSSA and MRSA). Bone and joint infections represent a complex set of diseases requiring prolonged antimicrobial therapy and are commonly caused by Gram-positive pathogens, including S. aureus. Methods The Telavancin Observational Use Registry (TOUR™) is a multicenter chart review study designed to characterize infection types, pathogens, and outcomes of patients treated with TLV in clinical practice. Data from TOUR were used to characterize a subset of bone and joint patients. Clinical data including patient demographics, pathogens, outcomes, and adverse events (AEs) were analyzed. Clinical outcomes were determined by investigators’ assessment. Results As of March 31, 2017, data for more than 1000 patients were collected from 46 sites. Of these, 286 patients were treated for bone and joint infections. Among these 286 patients, median age was 57 years (range 18−92 years) and 27% (n = 76) were aged ≥65 years, 66% (n = 189) were male, and 84% (n = 241) were White. The median body mass index was 30.0 kg/m2 (range 19.2−62.7 kg/m2). MRSA was the most commonly isolated pathogen at baseline (38%; n = 108). The median TLV daily dose and duration of treatment were 750 mg (range 300−1500 mg) or 8.3 mg/kg (range 3.7−16.9 mg/kg) and 26.5 days (range 1−119 days), respectively. Telavancin was used as second-line therapy in 71% (n = 202) of patients, and the majority of patients (66%; n = 189) were treated as outpatients. Overall, 71% (n = 203) of patients were cured or improved to step-down therapy, 9% (n = 25) failed treatment, 10% (n = 30) had an indeterminate clinical outcome at end of therapy (EOT), and 10% (n = 28) had missing or undocumented outcomes. Among the patients who had outcome assessment (n = 258) at EOT, 79% were cured

The adaptive capacity of New Zealand communities to wildfire

Treesearch

Pamela J. Jakes; E.R. Langer

2012-01-01

When we think of natural disasters in New Zealand, we tend to think of earthquakes or volcanic eruptions. However, a series of events is placing New Zealand communities at greater risk of wildfire. In a case study of a rural New Zealand community that experienced wildfire, process elements such as networks and relationships among locals, development and application of...

Health economics and health policy: experiences from New Zealand.

PubMed

Cumming, Jacqueline

2015-06-01

Health economics has had a significant impact on the New Zealand health system over the past 30 years. In this paper, I set out a framework for thinking about health economics, give some historical background to New Zealand and the New Zealand health system, and discuss examples of how health economics has influenced thinking about the organisation of the health sector and priority setting. I conclude the paper with overall observations about the role of health economics in health policy in New Zealand, also identifying where health economics has not made the contribution it could and where further influence might be beneficial.

[Taxonomy and definition of clinical registries].

PubMed

Costa, Giuseppe

2015-09-01

In order to assess the needs of knowledge about surveillance and registries in Italy and to prepare a proposal for the advancement of monitoring and recording capacity, a working group led by the Italian Association of Epidemiology and composed by the University of Turin, the Institute of Health and Agenas, carried out a survey of definitions and approaches used in public health and consulted the main Italian experts in surveillance and registries. Some of the reflections developed in this project are presented, to assess to which extent they are adaptable to the prospects the program PRIER aims to. Different aspects of the issue are analyzed: from the frame work necessary to identify information needs and how to improve the ability to measure and types of definitions and taxonomies of the registers, to the implications of the choices about what to include in registries on regulation of the instruments and investment priorities for new registries and surveillance.

Reprint of: Client interfaces to the Virtual Observatory Registry

NASA Astrophysics Data System (ADS)

Demleitner, M.; Harrison, P.; Taylor, M.; Normand, J.

2015-06-01

The Virtual Observatory Registry is a distributed directory of information systems and other resources relevant to astronomy. To make it useful, facilities to query that directory must be provided to humans and machines alike. This article reviews the development and status of such facilities, also considering the lessons learnt from about a decade of experience with Registry interfaces. After a brief outline of the history of the standards development, it describes the use of Registry interfaces in some popular clients as well as dedicated UIs for interrogating the Registry. It continues with a thorough discussion of the design of the two most recent Registry interface standards, RegTAP on the one hand and a full-text-based interface on the other hand. The article finally lays out some of the less obvious conventions that emerged in the interaction between providers of registry records and Registry users as well as remaining challenges and current developments.

The role of registries in rare genetic lipid disorders: Review and introduction of the first global registry in lipoprotein lipase deficiency.

PubMed

Steinhagen-Thiessen, Elisabeth; Stroes, Erik; Soran, Handrean; Johnson, Colin; Moulin, Philippe; Iotti, Giorgio; Zibellini, Marco; Ossenkoppele, Bas; Dippel, Michaela; Averna, Maurizio R

2017-07-01

A good understanding of the natural history of rare genetic lipid disorders is a pre-requisite for successful patient management. Disease registries have been helpful in this regard. Lipoprotein Lipase Deficiency (LPLD) is a rare, autosomal-recessive lipid disorder characterized by severe hypertriglyceridemia and a very high risk for recurrent acute pancreatitis, however, only limited data are available on its natural course. Alipogene tiparvovec (Glybera ® ) is the first gene therapy to receive Marketing Authorization in the European Union; GENIALL (GENetherapy In the MAnagement of Lipoprotein Lipase Deficiency), a 15-year registry focusing on LPLD was launched in 2014 as part of its Risk Management Plan. The aim of this publication is to introduce the GENIALL Registry within a structured literature review of registries in rare genetic lipid disorders. A total of 11 relevant initiatives/registries were identified (homozygous Familial Hypercholesterolemia (hoFH) [n = 5]; LPLD [n = 1]; Lysosomal Acid Lipase Deficiency [LALD, n = 1], detection of mutations in genetic lipid disorders [n = 4]). Besides one product registry in hoFH and the LALD registry, all other initiatives are local or country-specific. GENIALL is the first global prospective registry in LPLD that will collect physician and patient generated data on the natural course of LPLD, as well as long-term outcomes of gene therapy. There is a limited number of international initiatives focusing on the natural course of specific rare genetic lipid disorders. The GENIALL LPLD Registry could be the first step towards a future broader global initiative that collects data related to familial chylomicronemia syndrome and their underlying genetic causes. Copyright © 2016. Published by Elsevier B.V.

42 CFR 483.156 - Registry of nurse aides.

Code of Federal Regulations, 2010 CFR

2010-10-01

... 42 Public Health 5 2010-10-01 2010-10-01 false Registry of nurse aides. 483.156 Section 483.156... That Must Be Met by States and State Agencies: Nurse Aide Training and Competency Evaluation, and Paid Feeding Assistants § 483.156 Registry of nurse aides. (a) Establishment of registry. The State must...

42 CFR 483.156 - Registry of nurse aides.

Code of Federal Regulations, 2011 CFR

2011-10-01

... That Must Be Met by States and State Agencies: Nurse Aide Training and Competency Evaluation, and Paid Feeding Assistants § 483.156 Registry of nurse aides. (a) Establishment of registry. The State must... 42 Public Health 5 2011-10-01 2011-10-01 false Registry of nurse aides. 483.156 Section 483.156...

42 CFR 483.156 - Registry of nurse aides.

Code of Federal Regulations, 2014 CFR

2014-10-01

... That Must Be Met by States and State Agencies: Nurse Aide Training and Competency Evaluation, and Paid Feeding Assistants § 483.156 Registry of nurse aides. (a) Establishment of registry. The State must... 42 Public Health 5 2014-10-01 2014-10-01 false Registry of nurse aides. 483.156 Section 483.156...

42 CFR 483.156 - Registry of nurse aides.

Code of Federal Regulations, 2012 CFR

2012-10-01

... That Must Be Met by States and State Agencies: Nurse Aide Training and Competency Evaluation, and Paid Feeding Assistants § 483.156 Registry of nurse aides. (a) Establishment of registry. The State must... 42 Public Health 5 2012-10-01 2012-10-01 false Registry of nurse aides. 483.156 Section 483.156...

42 CFR 483.156 - Registry of nurse aides.

Code of Federal Regulations, 2013 CFR

2013-10-01

... That Must Be Met by States and State Agencies: Nurse Aide Training and Competency Evaluation, and Paid Feeding Assistants § 483.156 Registry of nurse aides. (a) Establishment of registry. The State must... 42 Public Health 5 2013-10-01 2013-10-01 false Registry of nurse aides. 483.156 Section 483.156...

Building an educated health informatics workforce--the New Zealand experience.

PubMed

Parry, David; Hunter, Inga; Honey, Michelle; Holt, Alec; Day, Karen; Kirk, Ray; Cullen, Rowena

2013-01-01

New Zealand has a rapidly expanding health information technology (IT) development industry and wide-ranging use of informatics, especially in the primary health sector. The New Zealand government through the National Health IT Board (NHITB) has promised to provide shared care health records of core information for all New Zealanders by 2014. One of the major barriers to improvement in IT use in healthcare is the dearth of trained and interested clinicians, management and technical workforce. Health Informatics New Zealand (HINZ) and the academic community in New Zealand are attempting to remedy this by raising awareness of health informatics at the "grass roots" level of the existing workforce via free "primer" workshops and by developing a sustainable cross-institutional model of educational opportunities. Support from the NHITB has been forthcoming, and the workshops started in early 2013, reaching out to clinical and other staff in post around New Zealand.

Electroconvulsive Therapy Practice in New Zealand.

PubMed

Fisher, Mark Wilkinson; Morrison, John; Jones, Paul Anthony

2017-06-01

The aim of this study was to describe the contemporary practice of electroconvulsive therapy (ECT) in New Zealand. A 53-item questionnaire was sent to all services providing ECT as of December 2015. Electroconvulsive therapy was provided by 16 services covering 15 district health boards funded by the New Zealand government. No private facilities provided ECT. All services providing ECT responded to an online survey questionnaire. Rates of ECT utilization were low relative to similar countries. Survey results indicated ECT was practiced to an overall good standard. Several resource and logistical issues potentially contributing to low ECT utilization were identified. Electroconvulsive therapy in New Zealand is provided using modern equipment and practices. However, overall rates of utilization remain low, perhaps as a result of controversy surrounding ECT and some resourcing issues.

Establishing of National Birth Defects Registry in Thailand.

PubMed

Pangkanon, Suthipong; Sawasdivorn, Siraporn; Kuptanon, Chulaluck; Chotigeat, Uraiwan; Vandepitte, Warunee

2014-06-01

Deaths attributed to birth defects are a major cause of infant and under-five mortality as well as lifetime disabilities among those who survive. In Thailand, birth defects contribute to 21% of neonatal deaths. There is currently no systematic registry for congenital anomalies in Thailand. Queen Sirikit National Institute of Child Health has initiated a Thailand Birth Defects Registry to capture birth defects among newborn infants. To establish the national birth defects registry in order to determine the burden of birth defects in Thailand. The birth defects data come from four main sources: National Birth Registry Database; National Health Security Office's reimbursement database; Online Birth Defect Registry Database designed to capture new cases that were detected later; and birth defects data from 20 participated hospitals. All data are linked by unique 13-digit national identification number and International Classification of Diseases (ICD)-10 codes. This registry includes 19 common structural birth defects conditions and pilots in 20 hospitals. The registry is hospital-based, hybrid reporting system, including only live births whose information was collected up to 1 year of age. 3,696 infants out of 67,813 live births (8.28% of total live births in Thailand) were diagnosed with congenital anomalies. The prevalence rate of major anomalies was 26.12 per 1,000 live births. The five most common birth defects were congenital heart defects, limb anomalies, cleft lip/cleft palate, Down syndrome, and congenital hydrocephalus respectively. The present study established the Birth Defects Registry by collecting data from four databases in Thailand. Information obtained from this registry and surveillance is essential in the planning for effective intervention programs for birth defects. The authors suggest that this program should be integrated in the existing public health system to ensure sustainability.

Rationale and design of a multidisciplinary national real-world registry on carotid stenting: the Italian Registry for Carotid Stenting (RISC).

PubMed

Biasi, Giorgio M; Deleo, Gaetano; Froio, Alberto; Cremonesi, Alberto; Inglese, Luigi; Lavitrano, Marialuisa; Setacci, Carlo

2006-04-01

The Registro Italiano per lo Stenting Carotideo (RISC, Italian Registry for Carotid Stenting) has been organized by Italian specialists from different disciplines directly involved in the prevention of stroke due to carotid plaques through stenting of carotid lesions. The Registry has been endorsed by the national societies of 4 different specialties: vascular surgery, interventional cardiology, radiology, and neuroradiology. Each society contributed in the planning stage. The basis for the registry is to collect data on carotid stenting procedures performed by different specialists with different techniques in a "real-world" setting without the limitations of a randomized clinical trial. The Registry was funded to enroll at least 1200 patients over a minimum period of 36 months. The results will be analyzed using the intention-to-treat principle and are anticipated in late 2006. Primary endpoints of the registry are the 30-day combined death and stroke rate and the occurrence of restenosis and ipsilateral neurological deficit at 12 and 24 months. Considerable attention has been paid to the registry's quality control program to ensure scientific validation. An online database facilitates the collection of data with speed and accuracy.

Vascular surgical data registries for small computers.

PubMed

Kaufman, J L; Rosenberg, N

1984-08-01

Recent designs for computer-based vascular surgical registries and clinical data bases have employed large centralized systems with formal programming and mass storage. Small computers, of the types created for office use or for word processing, now contain sufficient speed and memory storage capacity to allow construction of decentralized office-based registries. Using a standardized dictionary of terms and a method of data organization adapted to word processing, we have created a new vascular surgery data registry, "VASREG." Data files are organized without programming, and a limited number of powerful logical statements in English are used for sorting. The capacity is 25,000 records with current inexpensive memory technology. VASREG is adaptable to computers made by a variety of manufacturers, and interface programs are available for conversion of the word processor formated registry data into forms suitable for analysis by programs written in a standard programming language. This is a low-cost clinical data registry available to any physician. With a standardized dictionary, preparation of regional and national statistical summaries may be facilitated.

Agency for Toxic Substances and Disease Registry

MedlinePlus

... fact sheet. Hexachlorobenzene Learn important information about Hexachlorobenzene. ALS Registry 7th Anniversary Read how the Registry has been working to better understand ALS for 7 years now. Protect the Health of ...

The effects of neuromuscular exercise on medial knee joint load post-arthroscopic partial medial meniscectomy: ‘SCOPEX’ a randomised control trial protocol

PubMed Central

2012-01-01

-supervised neuromuscular exercise program on medial knee joint load during various tasks in people with a partial medial meniscectomy. If shown to reduce the knee adduction moment, neuromuscular exercise has the potential to prevent the onset of osteoarthritis or slow its progression in those with early disease. Trial Registration Australian New Zealand Clinical Trials Registry reference: ACTRN12612000542897 PMID:23181415

Selection of School Counsellors in New Zealand.

ERIC Educational Resources Information Center

Manthei, R. J.

This paper presents the views of the New Zealand Counselling and Guidance Association regarding the need for changes in the system of selecting individuals for training as school counselors in New Zealand. A number of options are offered for improving the mechanics of selection, recommending selection criteria, and suggesting procedures for…

The Infection Rate of Metal-on-Metal Total Hip Replacement Is Higher When Compared to Other Bearing Surfaces as Documented by the Australian Orthopaedic Association National Joint Replacement Registry.

PubMed

Huang, Phil; Lyons, Matt; O'Sullivan, Michael

2018-02-01

Despite the well-documented decline in the use of metal-on-metal (MoM) implants over the last decade, there are still controversies regarding whether all MoM implants are created equally. Complications such as elevated serum metal ion levels, aseptic lymphocyte-dominated vasculitis-associated lesion (ALVAL) and pseudotumours have all been well documented, but recent studies suggest increased risk of infection with MoM bearing surfaces. Most of these studies however have small patient numbers. The purpose of this study was to examine the cumulative incidence of revision for infection of MoM bearing surfaces in primary hip arthroplasty at a national and single-surgeon level. Data was collected from the Australian Orthopaedic Association National Joint Replacement Registry, which contains over 98% of all arthroplasties performed in Australia since 2001. The cumulative incidence of revision for infection was extracted at a national level and single-surgeon level. Two hundred seventy-six thousand eight hundred seventy-eight subjects were documented in the Australian registry. The 10-year cumulative percent revision for infection of MoM bearing surfaces in primary total hip replacement (THR) was 2.5% at a national level, compared to 0.8% for other bearing surfaces. The senior author contributed 1755 subjects with 7-year follow-up and a cumulative percent revision for infection of MoM bearing surfaces in primary THR of 36.9%, compared to 2.0% for other bearing surfaces. The cumulative percent of revision of MoM bearing surfaces is higher compared to other bearing surfaces; this is especially pronounced in cumulative percent of revision for infection. There was a higher cumulative percent of revision for infection in MoM bearings surfaces (in particular, large-head MoM) compared to other bearing surfaces at both the national and individual-surgeon level.

Radiographic Severity of Rheumatoid Arthritis in African-Americans: Results from the CLEAR Registry

PubMed Central

Bridges, S. Louis; Causey, Zenoria L.; Burgos, Paula I.; Huynh, B. Quynh N.; Hughes, Laura B.; Danila, Maria I.; van Everdingen, Amalia; Ledbetter, Stephanie; Conn, Doyt L.; Tamhane, Ashutosh; Westfall, Andrew O.; Jonas, Beth L.; Callahan, Leigh F.; Smith, Edwin A.; Brasington, Richard; Moreland, Larry W.; Alarcón, Graciela S.; van der Heijde, Désirée M.

2010-01-01

Objective To describe radiographic changes in African-Americans with rheumatoid arthritis (RA) from the CLEAR (Consortium for the Longitudinal Evaluation of African-Americans with Early Rheumatoid Arthritis) Registry, a multicenter observational study. Methods Self-declared African-American patients, were enrolled in CLEAR I, a longitudinal cohort of early RA (disease duration <2 years) from 2000 to 2005; or in CLEAR II, a cross-sectional cohort (any disease duration), from 2006 to the present. Demographic and clinical data were obtained, and sets of hand/wrist and foot radiographs were scored using the modified Sharp/van der Heijde scoring system. Results A total of 357 and 418 patients, respectively, have been enrolled into CLEAR I and CLEAR II. We report here an interim analysis of radiographic severity in these patients. For the CLEAR I cohort, 294 patients had a mean radiographic score of 2.89 at the baseline visit; 32.0% showed either erosions (25.9%) or joint space narrowing (JSN) (19.4%). At the 36-month visit the mean score was 5.65; 44.2% had erosions, 41.5% JSN and 55.4% had either. Among those patients without radiographic damage at baseline, 18.9% had progressed at the 36-month visit, compared to 57.1% of those with baseline damage (p<0.0001). For the CLEAR II cohort, 167 patients with RA of any duration, 65.3% exhibited joint erosions, 65.3% JSN and 74.8% exhibited either. The mean radiographic score was 33.42. Conclusion This is the largest radiographic study of African American RA patients. Damage occurs early in the disease and is associated with radiographic progression at 3 years of disease duration. The CLEAR Registry will provide a valuable resource for future analyses of genetic, clinical, and environmental factors associated with radiographic severity of RA in African-Americans. PMID:20461784

Patterns of Colorectal Cancer Care in Europe, Australia, and New Zealand

PubMed Central

2013-01-01

Colorectal cancer is the second most common cancer in women and the third most common in men worldwide. In this study, we used MEDLINE to conduct a systematic review of existing literature published in English between 2000 and 2010 on patterns of colorectal cancer care. Specifically, this review examined 66 studies conducted in Europe, Australia, and New Zealand to assess patterns of initial care, post-diagnostic surveillance, and end-of-life care for colorectal cancer. The majority of studies in this review reported rates of initial care, and limited research examined either post-diagnostic surveillance or end-of-life care for colorectal cancer. Older colorectal cancer patients and individuals with comorbidities generally received less surgery, chemotherapy, or radiotherapy. Patients with lower socioeconomic status were less likely to receive treatment, and variations in patterns of care were observed by patient demographic and clinical characteristics, geographical location, and hospital setting. However, there was wide variability in data collection and measures, health-care systems, patient populations, and population representativeness, making direct comparisons challenging. Future research and policy efforts should emphasize increased comparability of data systems, promote data standardization, and encourage collaboration between and within European cancer registries and administrative databases. PMID:23962509

Down syndrome: national conference on patient registries, research databases, and biobanks.

PubMed

Oster-Granite, Mary Lou; Parisi, Melissa A; Abbeduto, Leonard; Berlin, Dorit S; Bodine, Cathy; Bynum, Dana; Capone, George; Collier, Elaine; Hall, Dan; Kaeser, Lisa; Kaufmann, Petra; Krischer, Jeffrey; Livingston, Michelle; McCabe, Linda L; Pace, Jill; Pfenninger, Karl; Rasmussen, Sonja A; Reeves, Roger H; Rubinstein, Yaffa; Sherman, Stephanie; Terry, Sharon F; Whitten, Michelle Sie; Williams, Stephen; McCabe, Edward R B; Maddox, Yvonne T

2011-01-01

A December 2010 meeting, "Down Syndrome: National Conference on Patient Registries, Research Databases, and Biobanks," was jointly sponsored by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH) in Bethesda, MD, and the Global Down Syndrome Foundation (GDSF)/Linda Crnic Institute for Down Syndrome based in Denver, CO. Approximately 70 attendees and organizers from various advocacy groups, federal agencies (Centers for Disease Control and Prevention, and various NIH Institutes, Centers, and Offices), members of industry, clinicians, and researchers from various academic institutions were greeted by Drs. Yvonne Maddox, Deputy Director of NICHD, and Edward McCabe, Executive Director of the Linda Crnic Institute for Down Syndrome. They charged the participants to focus on the separate issues of contact registries, research databases, and biobanks through both podium presentations and breakout session discussions. Among the breakout groups for each of the major sessions, participants were asked to generate responses to questions posed by the organizers concerning these three research resources as they related to Down syndrome and then to report back to the group at large with a summary of their discussions. This report represents a synthesis of the discussions and suggested approaches formulated by the group as a whole. Copyright © 2011. Published by Elsevier Inc. All rights reserved.

A description and comparison of selected forest carbon registries: a guide for States considering the development of a forest carbon registry

Treesearch

Jessica Call; Jennifer Hayes

2007-01-01

There is increasing interest in tools for measuring and reducing emissions of carbon dioxide, a major greenhouse gas. Two tools that have been receiving a lot of attention include carbon markets and carbon registries. Carbon registries are established to record and track net carbon emission levels over time. These registries provide quantifiable and verifiable carbon...

Dementia registries around the globe and their applications: A systematic review.

PubMed

Krysinska, Karolina; Sachdev, Perminder S; Breitner, John; Kivipelto, Miia; Kukull, Walter; Brodaty, Henry

2017-09-01

Patient registries are valuable tools helping to address significant challenges in research, care, and policy. Registries, well embedded in many fields of medicine and public health, are relatively new in dementia. This systematic review presents the current situation in regards to dementia registries worldwide. We identified 31 dementia registries operating on an international, national, or local level between 1986 and 2016. More than half of the registries aimed to conduct or facilitate research, including preclinical research registries and registries recruiting research volunteers. Other dementia registries collected epidemiological or quality of care data. We present evidence of practical and economic outcomes of registries for research, clinical practice and policy, and recommendations for future development. Global harmonization of recruitment methods and minimum data would facilitate international comparisons. Registries provide a positive return on investment; their establishment and maintenance require ongoing support by government, policy makers, research funding bodies, clinicians, and individuals with dementia and their caregivers. Copyright © 2017 the Alzheimer's Association. All rights reserved.

New Zealand Police and Restorative Justice Philosophy

ERIC Educational Resources Information Center

Winfree, L. Thomas, Jr.

2004-01-01

In New Zealand, selected sworn police officers called youth aid officers participate in discussions and deliberations concerning the actions required to restore the sense of community balance upset by the actions of juvenile offenders. The author explores a representative sample of all sworn police officers serving in the New Zealand Police,…

Obesity and Intellectual Disability in New Zealand

ERIC Educational Resources Information Center

Stedman, Kurstyn V.; Leland, Louis S., Jr.

2010-01-01

Background: The international literature suggests that obesity is likely to be more pronounced in the population of people with intellectual disability (ID). However, there are no published New Zealand data for this population. Method: We accessed a database containing anonymous data for a New Zealand ID population. Ninety-eight people of 141 had…

15 CFR 995.21 - Registry of data users.

Code of Federal Regulations, 2011 CFR

2011-01-01

... information about the type and size of vessel that the NOAA ENC data has been provided for as well as an... 15 Commerce and Foreign Trade 3 2011-01-01 2011-01-01 false Registry of data users. 995.21 Section... § 995.21 Registry of data users. (a) CED or CEVAD shall maintain a registry of customers receiving NOAA...

Corporal punishment and child maltreatment in New Zealand.

PubMed

Kelly, Patrick

2011-01-01

On 2 May, 2007, the New Zealand Parliament passed a law repealing Section 59 of the Crimes Act. In so doing, New Zealand became the first English-speaking nation in the world to make corporal punishment of a child illegal. The passage of this legislation was surrounded by intense and persistent public debate, and supporters of corporal punishment continue to advocate against the law change to the present day. In Sweden, where the first stage of similar repeal took place in 1957, it may be difficult for many to understand the strength of the public opposition to this change in New Zealand. This article will present a viewpoint on the evolution of the debate in New Zealand, review the wider context of child maltreatment and family violence in New Zealand and summarize a range of attempts to prevent or intervene effectively in the cycle of dysfunction. Child maltreatment and family violence are public health issues of great importance, and a stain on all societies. While corporal punishment may be a significant contributing factor, there is no single 'solution'. Change must occur on multiple levels (political, economic, cultural, familial and professional) before the tide will turn.

Evolution of campylobacter species in New Zealand

USDA-ARS?s Scientific Manuscript database

New Zealand is an isolated archipelago in the South-West Pacific with a unique fauna and flora, a feature partly attributable to it being the last sizable land mass to be colonized by man. In this chapter we test the hypothesis that different periods in the history of New Zealand – from pre-history ...

Asia-Born New Zealand-Educated Business Graduates' Transition to Work

ERIC Educational Resources Information Center

Anderson, Vivienne; McGrath, Terry; Butcher, Andrew

2014-01-01

In 2008 the Asia New Zealand Foundation commissioned a three-year project examining Asia-born New Zealand-educated business graduates' study to work transitions. Data were collected through annual online surveys and in-depth interviews. Graduates were asked to discuss their post-study experiences, reflections on studying in New Zealand, and…

Stroke Trials Registry

MedlinePlus

... Trials News About Neurology Image Library Search The Internet Stroke Center Trials Registry Clinical Trials Interventions Conditions ... UT Southwestern Medical Center. Copyright © 1997-2011 - The Internet Stroke Center. All rights reserved. The information contained ...

Cohort Profile: The National Academy of Sciences-National Research Council Twin Registry (NAS-NRC Twin Registry)

PubMed Central

Gatz, Margaret; Harris, Jennifer R; Kaprio, Jaakko; McGue, Matt; Smith, Nicholas L; Snieder, Harold; Spiro, Avron; Butler, David A

2015-01-01

The National Academy of Sciences-National Research Council Twin Registry (NAS-NRC Twin Registry) is a comprehensive registry of White male twin pairs born in the USA between 1917 and 1927, both of the twins having served in the military. The purpose was medical research and ultimately improved clinical care. The cohort was assembled in the early 1960s with identification of approximately 16 000 twin pairs, review of service records, a brief mailed questionnaire assessing zygosity, and a health survey largely comparable to questionnaires used at that time with Scandinavian twin registries. Subsequent large-scale data collection occurred in 1974, 1985 and 1998, repeating the health survey and including information on education, employment history and earnings. Self-reported data have been supplemented with mortality, disability and medical data through record linkage. Potential collaborators should access the study website [http://www.iom.edu/Activities/Veterans/TwinsStudy.aspx] or e-mail the Medical Follow-up Agency at [Twins@nas.edu]. Questionnaire data are being prepared for future archiving with the National Archive of Computerized Data on Aging (NACDA) at the Inter-University Consortium for Political and Social Research (ICPSR), University of Michigan, MI. PMID:25183748

Designing exposure registries for improved tracking of occupational exposure and disease.

PubMed

Arrandale, Victoria H; Bornstein, Stephen; King, Andrew; Takaro, Timothy K; Demers, Paul A

2016-06-27

Registries are one strategy for collecting information on occupational exposure and disease in populations. Recently leaders in the Canadian occupational health and safety community have shown an interest in the use of occupational exposure registries. The primary goal of this study was to review a series of Canadian exposure registries to identify their strengths and weaknesses as a tool for tracking occupational exposure and disease in Canada. A secondary goal was to identify the features of an exposure registry needed to specifically contribute to prevention, including the identification of new exposure-disease relationships. A documentary review of five exposure registries from Canada was completed. Strengths and limitations of the registries were compared and key considerations for designing new registries were identified. The goals and structure of the exposure registries varied considerably. Most of the reviewed registries had voluntary registration, which presents challenges for the use of the data for either surveillance or epidemiology. It is recommended that eight key issues be addressed when planning new registries: clear registry goal(s), a definition of exposure, data to be collected (and how it will be used), whether enrolment will be mandatory, as well as ethical, privacy and logistical considerations. When well constructed, an exposure registry can be a valuable tool for surveillance, epidemiology and ultimately the prevention of occupational disease. However, exposure registries also have a number of actual and potential limitations that need to be considered.

Changes in the age pattern of New Zealand suicide rates.

PubMed

Snowdon, John

2017-01-13

It is timely to examine changes in male and female suicide rates across the age range in New Zealand, comparing them to some of the changes recorded in Australia. Data regarding suicide and population figures in New Zealand and Australia were obtained. The suicide rates of different age-groups in the two countries were calculated and compared. Data concerning 'open verdicts' were also obtained. The age patterns of suicide rates in New Zealand and Australia have changed markedly and similarly. Suicide rates of New Zealand males in their twenties increased threefold between the 1960s and 1990s, with a fall since then. Nevertheless, the 2009-13 youth suicide rates in New Zealand were double the corresponding rates in Australia. Since 1979-88 a decrease in suicide rates of men and women aged 60-79 has been even greater than in Australia. The Māori suicide rate is high in young men but almost zero in old age. The persistently high suicide rate of New Zealand youths (Māori much more than non-Māori) remains of concern. The rate is equally high among indigenous young Australians. There has been a welcome decrease in late-life suicide rates in New Zealand and Australia.

Design of a framework for the deployment of collaborative independent rare disease-centric registries: Gaucher disease registry model.

PubMed

Bellgard, Matthew I; Napier, Kathryn R; Bittles, Alan H; Szer, Jeffrey; Fletcher, Sue; Zeps, Nikolajs; Hunter, Adam A; Goldblatt, Jack

2018-02-01

Orphan drug clinical trials often are adversely affected by a lack of high quality treatment efficacy data that can be reliably compared across large patient cohorts derived from multiple governmental and country jurisdictions. It is critical that these patient data be captured with limited corporate involvement. For some time, there have been calls to develop collaborative, non-proprietary, patient-centric registries for post-market surveillance of aspects related to orphan drug efficacy. There is an urgent need for the development and sustainable deployment of these 'independent' registries that can capture comprehensive clinical, genetic and therapeutic information on patients with rare diseases. We therefore extended an open-source registry platform, the Rare Disease Registry Framework (RDRF) to establish an Independent Rare Disease Registry (IRDR). We engaged with an established rare disease community for Gaucher disease to determine system requirements, methods of data capture, consent, and reporting. A non-proprietary IRDR model is presented that can serve as autonomous data repository, but more importantly ensures that the relevant data can be made available to appropriate stakeholders in a secure, timely and efficient manner to improve clinical decision-making and the lives of those with a rare disease. Copyright © 2017 The Authors. Published by Elsevier Inc. All rights reserved.

The cost of doing business: cost structure of electronic immunization registries.

PubMed

Fontanesi, John M; Flesher, Don S; De Guire, Michelle; Lieberthal, Allan; Holcomb, Kathy

2002-10-01

To predict the true cost of developing and maintaining an electronic immunization registry, and to set the framework for developing future cost-effective and cost-benefit analysis. Primary data collected at three immunization registries located in California, accounting for 90 percent of all immunization records in registries in the state during the study period. A parametric cost analysis compared registry development and maintenance expenditures to registry performance requirements. Data were collected at each registry through interviews, reviews of expenditure records, technical accomplishments development schedules, and immunization coverage rates. The cost of building immunization registries is predictable and independent of the hardware/software combination employed. The effort requires four man-years of technical effort or approximately $250,000 in 1998 dollars. Costs for maintaining a registry were approximately $5,100 per end user per three-year period. There is a predictable cost structure for both developing and maintaining immunization registries. The cost structure can be used as a framework for examining the cost-effectiveness and cost-benefits of registries. The greatest factor effecting improvement in coverage rates was ongoing, user-based administrative investment.

Registry Assessment of Peripheral Interventional Devices (RAPID): Registry assessment of peripheral interventional devices core data elements.

PubMed

Jones, W Schuyler; Krucoff, Mitchell W; Morales, Pablo; Wilgus, Rebecca W; Heath, Anne H; Williams, Mary F; Tcheng, James E; Marinac-Dabic, J Danica; Malone, Misti L; Reed, Terrie L; Fukaya, Rie; Lookstein, Robert A; Handa, Nobuhiro; Aronow, Herbert D; Bertges, Daniel J; Jaff, Michael R; Tsai, Thomas T; Smale, Joshua A; Zaugg, Margo J; Thatcher, Robert J; Cronenwett, Jack L

2018-02-01

The current state of evaluating patients with peripheral artery disease and more specifically of evaluating medical devices used for peripheral vascular intervention (PVI) remains challenging because of the heterogeneity of the disease process, the multiple physician specialties that perform PVI, the multitude of devices available to treat peripheral artery disease, and the lack of consensus about the best treatment approaches. Because PVI core data elements are not standardized across clinical care, clinical trials, and registries, aggregation of data across different data sources and physician specialties is currently not feasible. Under the auspices of the U.S. Food and Drug Administration's Medical Device Epidemiology Network initiative-and its PASSION (Predictable and Sustainable Implementation of the National Registries) program, in conjunction with other efforts to align clinical data standards-the Registry Assessment of Peripheral Interventional Devices (RAPID) workgroup was convened. RAPID is a collaborative, multidisciplinary effort to develop a consensus lexicon and to promote interoperability across clinical care, clinical trials, and national and international registries of PVI. The current manuscript presents the initial work from RAPID to standardize clinical data elements and definitions, to establish a framework within electronic health records and health information technology procedural reporting systems, and to implement an informatics-based approach to promote the conduct of pragmatic clinical trials and registry efforts in PVI. Ultimately, we hope this work will facilitate and improve device evaluation and surveillance for patients, clinicians, health outcomes researchers, industry, policymakers, and regulators. Copyright © 2017 Society for Vascular Surgery. All rights reserved.

Kaiser Permanente implant registries benefit patient safety, quality improvement, cost-effectiveness.

PubMed

Paxton, Elizabeth W; Kiley, Mary-Lou; Love, Rebecca; Barber, Thomas C; Funahashi, Tadashi T; Inacio, Maria C S

2013-06-01

In response to the increased volume, risk, and cost of medical devices, in 2001 Kaiser Permanente (KP) developed implant registries to enhance patient safety and quality, and to evaluate cost-effectiveness. Using an integrated electronic health record system, administrative databases, and other institutional databases, orthopedic, cardiology, and vascular implant registries were developed in 2001, 2006, and 2011, respectively. These registries monitor patients, implants, clinical practices, and surgical outcomes for KP's 9 million members. Critical to registry success is surgeon leadership and engagement; each geographical region has a surgeon champion who provides feedback on registry initiatives and disseminates registry findings. The registries enhance patient safety by providing a variety of clinical decision tools such as risk calculators, quality reports, risk-adjusted medical center reports, summaries of surgeon data, and infection control reports to registry stakeholders. The registries are used to immediately identify patients with recalled devices, evaluate new and established device technology, and identify outlier implants. The registries contribute to cost-effectiveness initiatives through collaboration with sourcing and contracting groups and confirming adherence to device formulary guidelines. Research studies based on registry data have directly influenced clinical best practices. Registries are important tools to evaluate longitudinal device performance and safety, study the clinical indications for and outcomes of device implantation, respond promptly to recalls and advisories, and contribute to the overall high quality of care of our patients.

Cost of Operating Central Cancer Registries and Factors That Affect Cost: Findings From an Economic Evaluation of Centers for Disease Control and Prevention National Program of Cancer Registries.

PubMed

Tangka, Florence K L; Subramanian, Sujha; Beebe, Maggie Cole; Weir, Hannah K; Trebino, Diana; Babcock, Frances; Ewing, Jean

2016-01-01

The Centers for Disease Control and Prevention (CDC) evaluated the economics of the National Program of Cancer Registries to provide the CDC, the registries, and policy makers with the economics evidence-base to make optimal decisions about resource allocation. Cancer registry budgets are under increasing threat, and, therefore, systematic assessment of the cost will identify approaches to improve the efficiencies of this vital data collection operation and also justify the funding required to sustain registry operations. To estimate the cost of cancer registry operations and to assess the factors affecting the cost per case reported by National Program of Cancer Registries-funded central cancer registries. We developed a Web-based cost assessment tool to collect 3 years of data (2009-2011) from each National Program of Cancer Registries-funded registry for all actual expenditures for registry activities (including those funded by other sources) and factors affecting registry operations. We used a random-effects regression model to estimate the impact of various factors on cost per cancer case reported. The cost of reporting a cancer case varied across the registries. Central cancer registries that receive high-quality data from reporting sources (as measured by the percentage of records passing automatic edits) and electronic data submissions, and those that collect and report on a large volume of cases had significantly lower cost per case. The volume of cases reported had a large effect, with low-volume registries experiencing much higher cost per case than medium- or high-volume registries. Our results suggest that registries operate with substantial fixed or semivariable costs. Therefore, sharing fixed costs among low-volume contiguous state registries, whenever possible, and centralization of certain processes can result in economies of scale. Approaches to improve quality of data submitted and increasing electronic reporting can also reduce cost.

Evaluating the completeness of the national ALS registry, United States.

PubMed

Kaye, Wendy E; Wagner, Laurie; Wu, Ruoming; Mehta, Paul

2018-02-01

Our objective was to evaluate the completeness of the United States National ALS Registry (Registry). We compared persons with ALS who were passively identified by the Registry with those actively identified in the State and Metropolitan Area ALS Surveillance project. Cases in the two projects were matched using a combination of identifiers, including, partial social security number, name, date of birth, and sex. The distributions of cases from the two projects that matched/did not match were compared and Chi-square tests conducted to determine statistical significance. There were 5883 ALS cases identified by the surveillance project. Of these, 1116 died before the Registry started, leaving 4767 cases. We matched 2720 cases from the surveillance project to those in the Registry. The cases identified by the surveillance project that did not match cases in the Registry were more likely to be non-white, Hispanic, less than 65 years of age, and from western states. The methods used by the Registry to identify ALS cases, i.e. national administrative data and self-registration, worked well but missed cases. These findings suggest that developing strategies to identify and promote the Registry to those who were more likely to be missing, e.g. non-white and Hispanic, could be beneficial to improving the completeness of the Registry.

Updating the New Zealand Glacier Inventory

NASA Astrophysics Data System (ADS)

Baumann, S. C.; Anderson, B.; Mackintosh, A.; Lorrey, A.; Chinn, T.; Collier, C.; Rack, W.; Purdie, H.

2017-12-01

The last complete glacier inventory of New Zealand dates from the year 1978 (North Island 1988) and was manually constructed from oblique aerial photographs and geodetic maps (Chinn 2001). The inventory has been partly updated by Gjermundsen et al. (2011) for the year 2002 (40% of total area) and by Sirguey & More (2010) for the year 2009 (32% of total area), both using ASTER satellite imagery. We used Landsat 8 OLI/TIRS satellite data from February/March 2016 to map the total glaciated area. Clean and debris-covered ice were mapped semi-automatically. The band ratio approach was used for clean ice (ratio: red/SWIR). We mapped debris-covered ice using a supervised classification (maximum likelihood). Manual post processing was necessary due to misclassifications (e.g. lakes, clouds) or mapping in shadowed areas. It was also necessary to manually combine the clean and debris-covered parts into single glaciers. Additional input data for the post processing were Sentinel 2 images from the same time period, orthophotos from Land Information New Zealand (resolution: 0.75 m, date: Nov 2014), and the 1978/88 outlines from the GLIMS database (http://www.glims.org/). As the Sentinel 2 data were more heavily cloud covered compared to the Landsat 8 images, they were only used for post processing and not for the classification itself. Initial results show that New Zealand glaciers covered an area of about 1050 km² in 2016, a reduction of 16% since 1978. Approximately 17% of glacier area was covered in surface debris. The glaciers in the central Southern Alps around Mt Cook reduced in area by 24%. Glaciers in the North Island of New Zealand reduced by 71% since 1988, and only 2 km² of ice cover remained in 2016. Chinn, TJH (2001). "Distribution of the glacial water resources of New Zealand." Journal of Hydrology (NZ) 40(2): 139-187 Gjermundsen, EF, Mathieu, R, Kääb, A, Chinn, TJH, Fitzharris, B & Hagen, JO (2011). "Assessment of multispectral glacier mapping methods and

A UK medical devices regulator's perspective on registries.

PubMed

Wilkinson, John; Crosbie, Andy

2016-04-01

Registries are powerful tools to support manufacturers in the fulfilment of their obligations to perform post-market surveillance and post-market clinical follow-up of implantable medical devices. They are also a valuable resource for regulators in support of regulatory action as well as in providing information around the safety of new and innovative technologies. Registries can provide valuable information on the relative performance of both generic types and manufacturer's individual products and they complement other sources of information about device performance such as post-market clinical studies and adverse incident reporting. This paper describes the experience of the UK medical device regulator - the Medicines and Healthcare Products Regulatory Agency (MHRA) - of working with registries to monitor the safety and performance of medical devices. Based upon this experience, the authors identify a number of attributes for a registry which they consider to be key if the registry is to contribute effectively to the work of regulators on patient safety monitoring and medical device regulation.

Registry Assessment of Peripheral Interventional Devices (RAPID)　- Registry Assessment of Peripheral Interventional Devices Core Data Elements.

PubMed

Jones, W Schuyler; Krucoff, Mitchell W; Morales, Pablo; Wilgus, Rebecca W; Heath, Anne H; Williams, Mary F; Tcheng, James E; Marinac-Dabic, J Danica; Malone, Misti L; Reed, Terrie L; Fukaya, Rie; Lookstein, Robert; Handa, Nobuhiro; Aronow, Herbert D; Bertges, Daniel J; Jaff, Michael R; Tsai, Thomas T; Smale, Joshua A; Zaugg, Margo J; Thatcher, Robert J; Cronenwett, Jack L; Nc, Durham; Md, Silver Spring; Japan, Tokyo; Ny, New York; Ri, Providence; Vt, Burlington; Mass, Newton; Colo, Denver; Ariz, Tempe; Calif, Santa Clara; Minn, Minneapolis; Nh, Lebanon

2018-01-25

The current state of evaluating patients with peripheral artery disease and more specifically of evaluating medical devices used for peripheral vascular intervention (PVI) remains challenging because of the heterogeneity of the disease process, the multiple physician specialties that perform PVI, the multitude of devices available to treat peripheral artery disease, and the lack of consensus about the best treatment approaches. Because PVI core data elements are not standardized across clinical care, clinical trials, and registries, aggregation of data across different data sources and physician specialties is currently not feasible.Methods and Results:Under the auspices of the U.S. Food and Drug Administration's Medical Device Epidemiology Network initiative-and its PASSION (Predictable and Sustainable Implementation of the National Registries) program, in conjunction with other efforts to align clinical data standards-the Registry Assessment of Peripheral Interventional Devices (RAPID) workgroup was convened. RAPID is a collaborative, multidisciplinary effort to develop a consensus lexicon and to promote interoperability across clinical care, clinical trials, and national and international registries of PVI. The current manuscript presents the initial work from RAPID to standardize clinical data elements and definitions, to establish a framework within electronic health records and health information technology procedural reporting systems, and to implement an informatics-based approach to promote the conduct of pragmatic clinical trials and registry efforts in PVI. Ultimately, we hope this work will facilitate and improve device evaluation and surveillance for patients, clinicians, health outcomes researchers, industry, policymakers, and regulators.

Knee joint transplantation combined with surgical angiogenesis in rabbits – a new experimental model

PubMed Central

Kremer, Thomas; Giusti, Guilherme; Friedrich, Patricia F.; Willems, Wouter; Bishop, Allen T.; Giessler, Goetz A.

2012-01-01

Summary Purpose We have previously described a means to maintain bone allotransplant viability, without long-term immune modulation, replacing allogenic bone vasculature with autogenous vessels. A rabbit model for whole knee joint transplantation was developed and tested using the same methodology, initially as an autotransplant. Materials/Methods Eight New Zealand White rabbit knee joints were elevated on a popliteal vessel pedicle to evaluate limb viability in a non-survival study. Ten additional joints were elevated and replaced orthotopically in a fashion identical to allotransplantation, obviating only microsurgical repairs and immunosuppression. A superficial inferior epigastric facial (SIEF) flap and a saphenous arteriovenous (AV) bundle were introduced into the femur and tibia respectively, generating a neoangiogenic bone circulation. In allogenic transplantation, this step maintains viability after cessation of immunosuppression. Sixteen weeks later, x-rays, microangiography, histology, histomorphometry and biomechanical analysis were performed. Results Limb viability was preserved in the initial 8 animals. Both soft tissue and bone healing occurred in 10 orthotopic transplants. Surgical angiogenesis from the SIEF flap and AV bundle was always present. Bone and joint viability was maintained, with demonstrable new bone formation. Bone strength was less than the opposite side. Arthrosis and joint contractures were frequent. Conclusion We have developed a rabbit knee joint model and evaluation methods suitable for subsequent studies of whole joint allotransplantation. PMID:22113889

Review article: Use of renal registry data for research, health-care planning and quality improvement: what can we learn from registry data in the Asia-Pacific region?

PubMed

Lim, Teck-Onn; Goh, Adrian; Lim, Yam-Ngo; Morad, Zaki

2008-12-01

We review renal registry data from the Asia-Pacific region with an emphasis on their uses in health care and in dialysis care in particular. The review aims to demonstrate the information value of registry data. While renal registry provides a useful data resource for epidemiological research, there are severe methodological limitations in its application for analytical or therapeutic research. However, it is the use of renal registry data for public health and health-care management purposes that registry really comes into its own, and it is primarily for these that governments have invested in national patient and disease registries. We apply data from several renal registries in the Asia-Pacific region to illustrate its wide application for planning dialysis services, for evaluating dialysis practices and health outcomes, with a view to improving the quality of dialysis care. In the course of preparing the review, we have found that the quality and accessibility of renal registry data were highly variable across the region. Given the value of renal registry, every country in the Asia-Pacific region should establish one or should ensure that their current registries are better resourced and developed. Greater data sharing and collaboration among registries in the region could help advance the nephrology to serve our patients better.

United States Transuranium and Uranium Registries

DOE Office of Scientific and Technical Information (OSTI.GOV)

Kathren, R.L.; Filipy, R.E.; Dietert, S.E.

1991-06-01

This report summarizes the primary scientific activities of the United States Transuranium and Uranium Registries for the period October 1, 1989 through September 30, 1990. The Registries are parallel human tissue research programs devoted to the study of the actinide elements in humans. To date there have been 261 autopsy or surgical specimen donations, which include 11 whole bodies. The emphasis of the Registry was directed towards quality improvement and the development of a fully computerized data base that would incorporate not only the results of postmortem radiochemical analysis, but also medical and monitoring information obtained during life. Human subjectsmore » reviews were also completed. A three compartment biokinetic model for plutonium distribution is proposed. 2 tabs.« less

The Cost of Doing Business: Cost Structure of Electronic Immunization Registries

PubMed Central

Fontanesi, John M; Flesher, Don S; De Guire, Michelle; Lieberthal, Allan; Holcomb, Kathy

2002-01-01

Objective To predict the true cost of developing and maintaining an electronic immunization registry, and to set the framework for developing future cost-effective and cost-benefit analysis. Data Sources/Study Setting Primary data collected at three immunization registries located in California, accounting for 90 percent of all immunization records in registries in the state during the study period. Study Design A parametric cost analysis compared registry development and maintenance expenditures to registry performance requirements. Data Collection/Extraction Methods Data were collected at each registry through interviews, reviews of expenditure records, technical accomplishments development schedules, and immunization coverage rates. Principal Findings The cost of building immunization registries is predictable and independent of the hardware/software combination employed. The effort requires four man-years of technical effort or approximately $250,000 in 1998 dollars. Costs for maintaining a registry were approximately $5,100 per end user per three-year period. Conclusions There is a predictable cost structure for both developing and maintaining immunization registries. The cost structure can be used as a framework for examining the cost-effectiveness and cost-benefits of registries. The greatest factor effecting improvement in coverage rates was ongoing, user-based administrative investment. PMID:12479497

The Vietnam Era Twin Registry: a resource for medical research.

PubMed Central

Henderson, W G; Eisen, S; Goldberg, J; True, W R; Barnes, J E; Vitek, M E

1990-01-01

The Vietnam Era Twin Registry consists of 4,774 male-male twin pairs born between 1939 and 1957 with both brothers having served in the United States military during the Vietnam War. The registry was originally developed to provide the best control group for Vietnam-exposed servicemen to study the long-term health consequences of service in Vietnam. Recognizing the potential value of the registry for other areas of medical research, the Department of Veterans Affairs in 1988 opened the registry for use by both VA and non-VA investigators. The existence of centralized VA data bases for deaths and VA hospitalizations will strengthen future followup of the twins. This article describes the characteristics of the registry population and the process for accessing the registry. PMID:2116638

The increasing burden of potentially preventable liver disease among adult liver transplant recipients: A comparative analysis of liver transplant indication by era in Australia and New Zealand.

PubMed

Howell, Jessica; Balderson, Glenda; Hellard, Margaret; Gow, Paul; Strasser, Simone; Stuart, Katherine; Wigg, Alan; Jeffrey, Gary; Gane, Ed; Angus, Peter W

2016-02-01

Hepatitis C (HCV), hepatitis B (HBV), alcohol-related liver disease (ALD), and non-alcohol-related fatty liver disease (NAFLD) are leading indications for adult liver transplantation in Australia and New Zealand. However, these diseases are potentially preventable through effective primary and/or secondary prevention strategies. This study evaluates the relative contribution of potentially preventable liver diseases to liver transplant numbers in Australia and New Zealand over time. Prospectively recorded clinical, demographic, and outcome data were collected from the Australian and New Zealand Liver Transplant Registry for all primary adult liver transplants performed in Australia and New Zealand from 1 January 1985 until 31 December 2012. Potentially preventable liver disease was defined as HBV, HCV, NAFLD, ALD, and HCC. The etiology of liver disease leading to liver transplantation and the proportion of preventable liver disease-related liver transplantation was compared between Era 1 (1985-1993), Era 2 (1994-2003), and Era 3 (2004-2012). Overall, 1252 of 3266 adult primary liver transplants (38.3%) were performed for potentially preventable liver disease. There was a significant increase in the proportion of liver transplants because of preventable liver disease from 21.2% (93 of 439) in Era 1, to 49.8% (623 of 1252) in Era 2 and 63.5% (1000 of 1575) in Era 3 (P < 0.0001). Over time, there was a significant increase in HCV (P < 0.0001), ALD (P = 0.002), and NAFLD (P < 0.0001) as a primary indication for adult liver transplant, whereas HBV has significantly decreased from Era 1 to Era 3 as an indication for transplant (P < 0.0001). The number of transplants performed for HCC also increased across Eras (P < 0.0001), with 84% due to underlying potentially preventable liver disease. Since 2004, the majority of primary adult liver transplants within Australia and New Zealand have been because of potentially preventable liver diseases and the

Patient-reported outcome measures in arthroplasty registries

PubMed Central

Eresian Chenok, Kate; Bohm, Eric; Lübbeke, Anne; Denissen, Geke; Dunn, Jennifer; Lyman, Stephen; Franklin, Patricia; Dunbar, Michael; Overgaard, Søren; Garellick, Göran; Dawson, Jill

2016-01-01

The International Society of Arthroplasty Registries (ISAR) Steering Committee established the Patient-Reported Outcome Measures (PROMs) Working Group to convene, evaluate, and advise on best practices in the selection, administration, and interpretation of PROMs and to support the adoption and use of PROMs for hip and knee arthroplasty in registries worldwide. The 2 main types of PROMs include generic (general health) PROMs, which provide a measure of general health for any health state, and specific PROMs, which focus on specific symptoms, diseases, organs, body regions, or body functions. The establishment of a PROM instrument requires the fulfillment of methodological standards and rigorous testing to ensure that it is valid, reliable, responsive, and acceptable to the intended population. A survey of the 41 ISAR member registries showed that 8 registries administered a PROMs program that covered all elective hip or knee arthroplasty patients and 6 registries collected PROMs for sample populations; 1 other registry had planned but had not started collection of PROMs. The most common generic instruments used were the EuroQol 5 dimension health outcome survey (EQ-5D) and the Short Form 12 health survey (SF-12) or the similar Veterans RAND 12-item health survey (VR-12). The most common specific PROMs were the Hip disability and Osteoarthritis Outcome Score (HOOS), the Knee injury and Osteoarthritis Outcome Score (KOOS), the Oxford Hip Score (OHS), the Oxford Knee Score (OKS), the Western Ontario and McMaster Universities Arthritis Index (WOMAC), and the University of California at Los Angeles Activity Score (UCLA). PMID:27168175

Geographic region, socioeconomic position and the utilisation of primary total joint replacement for hip or knee osteoarthritis across western Victoria: a cross-sectional multilevel study of the Australian Orthopaedic Association National Joint Replacement Registry.

PubMed

Brennan-Olsen, Sharon; Vogrin, Sara; Holloway, Kara L; Page, Richard S; Sajjad, Muhammad A; Kotowicz, Mark A; Livingston, Patricia M; Khasraw, Mustafa; Hakkennes, Sharon; Dunning, Trish L; Brumby, Susan; Pedler, Daryl; Sutherland, Alasdair; Venkatesh, Svetha; Williams, Lana J; Duque, Gustavo; Pasco, Julie A

2017-11-06

Compared to urban residents, those in rural/regional areas often experience inequitable healthcare from specialist service providers. Independent of small between-area differences in utilisation, socially advantaged groups had the greatest uptake of joint replacement. These data suggest low correlation between 'need' vs. 'uptake' of surgery in rural/regional areas. Compared to urban residents, those in rural and regional areas often experience inequitable healthcare from specialist service providers, often due to geographical issues. We investigated associations between socioeconomic position (SEP), region of residence and utilisation of primary total knee replacement (TKR) and/or total hip replacement (THR) for osteoarthritis. As part of the Ageing, Chronic Disease and Injury study, we extracted data from the Australian Orthopaedic Association National Joint Replacement Registry (2011-2013) for adults that utilised primary TKR (n = 4179; 56% female) and/or THR (n = 3120; 54% female). Residential addresses were matched with the Australian Bureau of Statistics (ABS) 2011 census data: region of residence was defined according to local government areas (LGAs), and area-level SEP (quintiles) defined using an ABS-derived composite index. The ABS-determined control population (n = 591,265; 51% female) excluded individuals identified as cases. We performed multilevel logistic regression modelling using a stratified two-stage cluster design. TKR was higher for those aged 70-79 years (AOR 1.4 95%CI 1.3-1.5; referent = 60-69 years) and in the most advantaged SEP quintile (AOR 2.1, 95%CI 1.8-2.3; referent = SEP quintile 3); results were similar for THR (70-79 years = AOR 1.7, 95%CI 1.5-1.8; SEP quintile 5 = AOR 2.5, 95%CI 2.2-2.8). Total variances contributed by the variance in LGAs were 2% (SD random effects ± 0.28) and 3% (SD ± 0.32), respectively. Independent of small between-LGA differences in utilisation, and in contrast to the expected greater

Wide field of view CT and acromioclavicular joint instability: A technical innovation.

PubMed

Dyer, David R; Troupis, John M; Kamali Moaveni, Afshin

2015-06-01

A 21-year-old female with a traumatic shoulder injury is investigated and managed for symptoms relating to this injury. Pathology at the acromioclavicular joint is detected clinically; however, clinical examination and multiple imaging modalities do not reach a unified diagnosis on the grading of this acromioclavicular joint injury. When management appropriate to that suggested injury grading fail to help the patient's symptoms, further investigation methods were utilised. Wide field of view, dynamic CT (4D CT) is conducted on the patient's affected shoulder using a 320 × 0.5 mm detector multislice CT. Scans were conducted with a static table as the patient completed three movements of the affected shoulder. Capturing multiple data sets per second over a z-axis of 16 cm, measurements of the acromioclavicular joint were made, to show dynamic changes at the joint. Acromioclavicular (AC) joint translations were witnessed in three planes (a previously unrecognised pathology in the grading of acromioclavicular joint injuries). Translation in multiple planes was also not evident on careful clinical examination of this patient. AC joint width, anterior-posterior translation, superior-inferior translation and coracoclavicular width were measured with planar reconstructions while volume-rendered images and dynamic sequences aiding visual understanding of the pathology. Wide field of view dynamic CT (4D CT) is an accurate and quick modality to diagnose complex acromioclavicular joint injury. It provides dynamic information that no other modality can; 4D CT shows future benefits for clinical approach to diagnosis and management of acromioclavicular joint injury, and other musculoskeletal pathologies. © 2015 The Royal Australian and New Zealand College of Radiologists.

14 CFR 47.19 - FAA Aircraft Registry.

Code of Federal Regulations, 2010 CFR

2010-01-01

... 14 Aeronautics and Space 1 2010-01-01 2010-01-01 false FAA Aircraft Registry. 47.19 Section 47.19 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION AIRCRAFT AIRCRAFT REGISTRATION General § 47.19 FAA Aircraft Registry. Each application, request, notification, or other...

Decision counseling and participation in a pancreas cancer registry.

PubMed

Myers, Ronald; Lavu, Harish; Keith, Scott W; Kelly, Heidi; O'Rourke, Nadine; Cocroft, James; Quinn, Anna; Potluri, Vishnu; Yeo, Charles J

2014-01-01

Cancer registries play a vital role in research, as they provide important data that can be used to assess disease etiology and risk. Specialty registries can help to address the need for information on defined cancer types. However, achieving high rates of participation in such registries is problematic.We studied the impact of decision support on patient participation in a hospital-based pancreas cancer registry, the Jefferson Pancreas Tumor Registry (JPTR). In this study, we assembled a nonrandomized cohort of 40 patients, of whom 20 were exposed to the intervention and 20 were exposed to routine recruiting methods. Patients in the control group were invited to join the JPTR; while those in the intervention group were also invited to join the JPTR, and received decision support related to participation. Registry participation was assessed at 90 days. At baseline, patient gender, race, and stage of pancreatic cancer did not vary significantly between study groups. Overall, participation in the intervention group was significantly higher (P = 0.01) than in the control group (55% and 10%, respectively). In the intervention group, altruism was the major factor motivating patient participation, while patient concerns related to treatment recovery, registration time and complexity, and the confidentiality of registry data discouraged participation.

Tsunami Forecasting and Monitoring in New Zealand

NASA Astrophysics Data System (ADS)

Power, William; Gale, Nora

2011-06-01

New Zealand is exposed to tsunami threats from several sources that vary significantly in their potential impact and travel time. One route for reducing the risk from these tsunami sources is to provide advance warning based on forecasting and monitoring of events in progress. In this paper the National Tsunami Warning System framework, including the responsibilities of key organisations and the procedures that they follow in the event of a tsunami threatening New Zealand, are summarised. A method for forecasting threat-levels based on tsunami models is presented, similar in many respects to that developed for Australia by Allen and Greenslade (Nat Hazards 46:35-52, 2008), and a simple system for easy access to the threat-level forecasts using a clickable pdf file is presented. Once a tsunami enters or initiates within New Zealand waters, its progress and evolution can be monitored in real-time using a newly established network of online tsunami gauge sensors placed at strategic locations around the New Zealand coasts and offshore islands. Information from these gauges can be used to validate and revise forecasts, and assist in making the all-clear decision.

Frequencies of hepatitis B and C infections among haemodialysis and peritoneal dialysis patients in Asia-Pacific countries: analysis of registry data.

PubMed

Johnson, David W; Dent, Hannah; Yao, Qiang; Tranaeus, Anders; Huang, Chiu-Chin; Han, Dae-Suk; Jha, Vivekanand; Wang, Tao; Kawaguchi, Yoshindo; Qian, Jiaqi

2009-05-01

The impact of dialysis modality on the rates and types of infectious complications has not been well studied. The aim of the present investigation was to evaluate the rates of hepatitis C virus (HCV) and hepatitis B virus (HBV) infections in peritoneal dialysis (PD) and haemodialysis (HD) patients in the Asia-Pacific region. The study included the most recent period-prevalent data recorded in the national or regional dialysis registries of the 10 Asia-Pacific countries/areas (Australia, New Zealand, Japan, China, Taiwan, Korea, Thailand, Hong Kong, Malaysia and India), where such data were available. Longitudinal data were also available for all incident Australian and New Zealand patients commencing dialysis between 1 April 1995 and 31 December 2005. Rates of HCV and HBV infections were compared by chi-square, Poisson regression and Kaplan-Meier survival analyses, as appropriate. Data were obtained on 201,590 patients (HD 173,788; PD 27,802). HCV seroprevalences ranged between 0.7% and 18.1% across different countries and were generally higher in HD versus PD populations (7.9% +/- 5.5% versus 3.0% +/- 2.0%, P = 0.01). Seroconversion rates on dialysis were also significantly higher in HD patients (incidence rate ratio PD versus HD 0.33, 95% CI 0.13-0.75). HCV infection was highly predictive of mortality in Japan (relative risk 1.37, 95% CI 1.15-1.62, P = 0.003) and in Australia and New Zealand (adjusted hazards ratio 1.29, 95% CI 1.05-1.58). HBV infection data were limited, but less clearly influenced by dialysis modality. Dialysis modality selection significantly influences the risk of HCV infection experienced by end-stage renal failure patients in the Asia-Pacific region. No such association could be identified for HBV infection.

Cost of Operating Central Cancer Registries and Factors That Affect Cost: Findings From an Economic Evaluation of Centers for Disease Control and Prevention National Program of Cancer Registries

PubMed Central

Tangka, Florence K. L.; Subramanian, Sujha; Beebe, Maggie Cole; Weir, Hannah K.; Trebino, Diana; Babcock, Frances; Ewing, Jean

2016-01-01

Context The Centers for Disease Control and Prevention evaluated the economics of the National Program of Cancer Registries to provide the Centers for Disease Control and Prevention, the registries, and policy makers with the economic evidence-base to make optimal decisions about resource allocation. Cancer registry budgets are under increasing threat, and, therefore, systematic assessment of the cost will identify approaches to improve the efficiencies of this vital data collection operation and also justify the funding required to sustain registry operations. Objectives To estimate the cost of cancer registry operations and to assess the factors affecting the cost per case reported by National Program of Cancer Registries–funded central cancer registries. Methods We developed a Web-based cost assessment tool to collect 3 years of data (2009-2011) from each National Program of Cancer Registries–funded registry for all actual expenditures for registry activities (including those funded by other sources) and factors affecting registry operations. We used a random-effects regression model to estimate the impact of various factors on cost per cancer case reported. Results The cost of reporting a cancer case varied across the registries. Central cancer registries that receive high-quality data from reporting sources (as measured by the percentage of records passing automatic edits) and electronic data submissions, and those that collect and report on a large volume of cases had significantly lower cost per case. The volume of cases reported had a large effect, with low-volume registries experiencing much higher cost per case than medium- or high-volume registries. Conclusions Our results suggest that registries operate with substantial fixed or semivariable costs. Therefore, sharing fixed costs among low-volume contiguous state registries, whenever possible, and centralization of certain processes can result in economies of scale. Approaches to improve quality of

Predator-Free New Zealand: Conservation Country.

PubMed

Russell, James C; Innes, John G; Brown, Philip H; Byrom, Andrea E

2015-05-01

Eradications of invasive species from over 1000 small islands around the world have created conservation arks, but to truly address the threat of invasive species to islands, eradications must be scaled by orders of magnitude. New Zealand has eradicated invasive predators from 10% of its offshore island area and now proposes a vision to eliminate them from the entire country. We review current knowledge of invasive predator ecology and control technologies in New Zealand and the biological research, technological advances, social capacity and enabling policy required. We discuss the economic costs and benefits and conclude with a 50-year strategy for a predator-free New Zealand that is shown to be ecologically obtainable, socially desirable, and economically viable. The proposal includes invasive predator eradication from the two largest offshore islands, mammal-free mainland peninsulas, very large ecosanctuaries, plus thousands of small projects that will together merge eradication and control concepts on landscape scales.

Predator-Free New Zealand: Conservation Country

PubMed Central

Russell, James C.; Innes, John G.; Brown, Philip H.; Byrom, Andrea E.

2015-01-01

Eradications of invasive species from over 1000 small islands around the world have created conservation arks, but to truly address the threat of invasive species to islands, eradications must be scaled by orders of magnitude. New Zealand has eradicated invasive predators from 10% of its offshore island area and now proposes a vision to eliminate them from the entire country. We review current knowledge of invasive predator ecology and control technologies in New Zealand and the biological research, technological advances, social capacity and enabling policy required. We discuss the economic costs and benefits and conclude with a 50-year strategy for a predator-free New Zealand that is shown to be ecologically obtainable, socially desirable, and economically viable. The proposal includes invasive predator eradication from the two largest offshore islands, mammal-free mainland peninsulas, very large ecosanctuaries, plus thousands of small projects that will together merge eradication and control concepts on landscape scales. PMID:26955079

Services Available to Visually Impaired Persons in New Zealand.

ERIC Educational Resources Information Center

LaGrow, S.; And Others

1990-01-01

The Royal New Zealand Foundation for the Blind is primarily responsible for services to visually impaired people in New Zealand. The article describes its history, structure, services, and plans for the future. (Author/JDD)

Patterns and natural history of radiographically defined osteoarthritis in a registry of women

DOE Office of Scientific and Technical Information (OSTI.GOV)

Cerhan, J.R.

The authors studied the natural history of osteoarthritis (OA) in a registry of female radium dial painters who had longitudinal radiographic examinations. Radiographs of the hands, spine, pelvis, knees and feet were graded for OA using the method of Kellgren and Lawrence. The prevalence of OA in this study was consistent with other population-based studies of OA in white women. A full body OA score was defined as the summation of the number of joints with OA. Higher full body OA score was associated with increased risk of all-cause mortality, after controlling for age and year of birth. Variables cross-sectionallymore » associated with the full body OA score included increasing age; later year of birth; increasing systolic and diastolic blood pressure; increasing uric acid level; a history of diabetes, cholecystectomy, or cardiovascular disease; and being a current drinker of alcohol or being a current smoker. The authors described that natural history of OA for individual joints, joint groups, and the full body. The authors found that progression of OA was common, but not universal. Every joint group studied also displayed some amount of regression, although the authors could not conclude how much of the regression was real versus measurement error. The authors found that, in general, joints with a baseline OA grade of one to four were more likely to progress to a higher grade compared to joints with a grade of zero at baseline. Finally, the authors described predictors of followup OA status and predictors of change from baseline to followup for the full body. Predictors of greater change (to more OA) included increasing age, a history of cholecystectomy, having ever drank alcohol, and not having ever smoked. Predictors of a higher followup OA status included increasing age, increasing baseline full body OA score, a history of cholecystectomy, being a current drinker, and having never smoked.« less

Information Services in New Zealand and the Pacific.

ERIC Educational Resources Information Center

Ronnie, Mary A.

This paper examines information services and resource sharing within New Zealand with a view to future participation in a Pacific resource sharing network. Activities of the National Library, the New Zealand Library Resources Committee, and the Information Services Committee are reviewed over a 40-year period, illustrating library cooperative…

Community Psychology in Australia and Aotearoa/New Zealand

ERIC Educational Resources Information Center

Fisher, Adrian T.; Gridley, Heather; Thomas, David R.; Bishop, Brian

2008-01-01

Community psychology in Australia and Aotearoa/New Zealand reflect interesting parallels and convergences. While both have a strong educational basis influenced by North American publications, they have developed foci and forms of practice reflecting the cultural, political, and historic underpinnings of these two countries. In New Zealand,…

[History of the cancer registry in Mexico].

PubMed

Allende-López, Aldo; Fajardo-Gutiérrez, Arturo

2011-01-01

A cancer registry is to record the data which let us to know the epidemiology of neoplasm, but led us take a decision in medical policy about this health problem that benefit patients. In this paper we did a brief historical review about models and attempts for having a cancer registry in Mexico. However, since 1940 "the fight against cancer" was declared, we have not had a confident cancer registry today validated and built with data from whole the country. In 1982, the Registro Nacional del Cancer was created. The design and validation of a registration card in four hospitals were the main results. In 1988, the Registro Nacional del Cancer was reinforced with a computerized system for facilitation the data capture. In 1994, it was signed the first interinstitutional agreement that led to Registro Histopatol6gico de Neoplasias Malignas. In 1996, the Instituto Mexicano del Seguro Social established a cancer registry in children in Mexico with the intention to have data from this population.

Bicentenary 2016: The First New Zealand School

ERIC Educational Resources Information Center

Jones, Alison; Jenkins, Kuni Kaa

2016-01-01

Maori leaders visiting Australia invited a Pakeha (in this case, English) teacher to come to New Zealand to teach the children to read and write. On 12th August 1816, 200 years ago this year, the first school in New Zealand opened. Twenty-four Maori children came on that day, and each had his or her name written down. The teacher Thomas Kendall…

Iliac Arteries: How Registries Can Help Improve Outcomes

PubMed Central

Tapping, Charles Ross; Uberoi, Raman

2014-01-01

There are many publications reporting excellent short and long-term results with endovascular techniques. Patients included in trials are often highly selected and may not represent real world practice. Registries are important to interventional radiologists for several reasons; they reflect prevailing practice and can be used to establish real world standards of care and safety profiles. This information allows individuals and centers to evaluate their outcomes compared with national norms. The British Iliac Angioplasty and Stenting (BIAS) registry is an example of a mature registry that has been collecting data since 2000 and has been reporting outcomes since 2001. This article discusses the evidence to support both endovascular and surgical intervention for aortoiliac occlusive disease, the role of registries, and optimal techniques for aortoiliac intervention. PMID:25435659

Integrating data from multiple sources for data completeness in a web-based registry for pediatric renal transplantation--the CERTAIN Registry.

PubMed

Köster, Lennart; Krupka, Kai; Höcker, Britta; Rahmel, Axel; Samuel, Undine; Zanen, Wouter; Opelz, Gerhard; Süsal, Caner; Döhler, Bernd; Plotnicki, Lukasz; Kohl, Christian D; Knaup, Petra; Tönshoff, Burkhard

2015-01-01

Patient registries are a useful tool to measure outcomes and compare the effectiveness of therapies in a specific patient population. High data quality and completeness are therefore advantageous for registry analysis. Data integration from multiple sources may increase completeness of the data. The pediatric renal transplantation registry CERTAIN identified Eurotransplant (ET) and the Collaborative Transplant Study (CTS) as possible partners for data exchange. Import and export interfaces with CTS and ET were implemented. All parties reached their projected goals and benefit from the exchange.

Differences in the Korea Acute Myocardial Infarction Registry Compared with Western Registries

PubMed Central

2017-01-01

The Korea Acute Myocardial Infarction Registry (KAMIR) is the first nationwide registry that reflects current therapeutic approaches and acute myocardial infarction (AMI) management in Korea. The results of the KAMIR demonstrated different risk factors and responses to medical and interventional treatments. The results indicated that the incidence of ST-elevation myocardial infarction (STEMI) was relatively high, and that the prevalence of dyslipidemia was relatively low with higher triglyceride and lower high-density lipoprotein cholesterol levels. Percutaneous coronary intervention (PCI) rates were high for both STEMI and non-ST-elevation myocardial infarction (NSTEMI) with higher use of drug-eluting stents (DESs). DES were effective and safe without increased risk of stent thrombosis in Korean AMI patients. Triple antiplatelet therapy, consisting of aspirin, clopidogrel, and cilostazol, was effective in preventing adverse clinical outcomes after PCI. Statin therapy was effective in Korean AMI patients, including those with very low levels of low-density lipoprotein cholesterol and those with cardiogenic shock. The KAMIR score had a greater predictive value than Thrombolysis in Myocardial Infarction (TIMI) and Global Registry of Acute Coronary Events (GRACE) scores for long-term mortality in AMI patients. Based on these results, the KAMIR will be instrumental for establishing new therapeutic strategies and effective methods for secondary prevention of AMI and guidelines for Asian patients. PMID:29035427

The New Zealand Model for Prevention of Cyberviolence.

ERIC Educational Resources Information Center

Butterfield, Liz

2003-01-01

Describes the national initiative of the New Zealand Internet Safety Group to prevent cyberviolence through education. The effort includes distribution of an Internet Safety Kit to each school in the country, research on Internet use in New Zealand, and a national symposium on the social impact of the Internet. (SLD)

Anti-Nuclear Attitudes in New Zealand and Australia,

DTIC Science & Technology

1985-12-01

Wellington, 5 March 1985. 5. John Henderson, Keith Jackson , Richard Kennawav, eds. Beyond New Zealand; The Foreign Policy of a Small State. (Auckland...the city of San Francisco this first day of September, 1951. For Australia: PERCY C. SPENDER For New Zealand: C.A. BERENDSEN For the United States of

Follow-up data on the effectiveness of New Zealand's national school based child protection program.

PubMed

Briggs, F; Hawkins, R M

1994-08-01

In 1987, in response to concerns relating to the high incidence of (reported) child sexual abuse, the Ministry of Education and New Zealand Policy jointly introduced a national school-based personal safety program, Keeping Ourselves Safe. In December 1990, 252 children were interviewed in eight primary schools, selected as representative of the ethnic, economic, and social diversity of New Zealand society (Briggs 1991). The interview schedule was designed on problem-solving lines to establish whether children could identify and respond safely to a wide range of potentially unsafe situations. One year later, 117 of the children were available for interview using the same questionnaire. Children exposed to Keeping Ourselves Safe had retained and increased their safety strategies during that time. The variables of gender, age, race, and academic level did not affect improvement but the number of initial gains by children with highly committed teachers was almost double the number achieved by teachers classified as having low levels of commitment. Prior to using the program, children from low socioeconomic groups had significantly lower knowledge and skill levels than their middle-class contemporaries. Middle-class children also gained more from the program. The difference in gains achieved is explained in terms of parental participation in the school program.

International Students in New Zealand: Needs and Responses

ERIC Educational Resources Information Center

Butcher, Andrew; McGrath, Terry

2004-01-01

This paper considers the pastoral care needs of international students in New Zealand. Using the relatively new Code of Practice for the Pastoral Care of International Students as its departure point, this paper critically evaluates the assertion that there is a crisis in New Zealand's export education industry. It does this through considering…

Is There an Association Between Smoking Status and Prosthetic Joint Infection After Primary Total Joint Arthroplasty?

PubMed

Gonzalez, Amanda I; Luime, Jolanda J; Uçkay, Ilker; Hannouche, Didier; Hoffmeyer, Pierre; Lübbeke, Anne

2018-02-23

Recent reports highlighted the association between smoking and higher risk of postsurgical infections. The aim was to compare the incidence of prosthetic joint infection after primary total joint arthroplasty (TJA) according to smoking status. A prospective hospital registry-based cohort study was performed including all primary knee and hip TJAs performed between March 1996 and December 2013. Smoking status preoperatively was classified into never, former, and current smoker. Incidence rates and hazard ratios (HRs) for prosthetic joint infection according to smoking status were assessed within the first year and beyond. We included 8559 primary TJAs (mean age 69.5 years), and median follow-up was 67 months. There were 5722 never, 1315 former, and 1522 current smokers. Incidence rates of infection within the first year for never, former, and current smokers were, respectively, 4.7, 10.1, and 10.9 cases/1000 person-years, comparing ever vs never smokers, crude and adjusted HRs were 2.35 (95% confidence interval [CI] 1.39-3.98) and 1.8 (95% CI 1.04-3.2). Beyond the first year, crude and adjusted HRs were 1.37 (95% CI 0.78-2.39) and 1.12 (95% CI 0.61-2.04). Smoking increased the infection risk about 1.8 times after primary hip or knee TJA in both current and former smokers. Beyond the first year, the infection risk was similar to never smokers. Copyright © 2018 Elsevier Inc. All rights reserved.

Blue whale vocalizations recorded around New Zealand: 1964-2013.

PubMed

Miller, Brian S; Collins, Kym; Barlow, Jay; Calderan, Susannah; Leaper, Russell; McDonald, Mark; Ensor, Paul; Olson, Paula A; Olavarria, Carlos; Double, Michael C

2014-03-01

Previous underwater recordings made in New Zealand have identified a complex sequence of low frequency sounds that have been attributed to blue whales based on similarity to blue whale songs in other areas. Recordings of sounds with these characteristics were made opportunistically during the Southern Ocean Research Partnership's recent Antarctic Blue Whale Voyage. Detections of these sounds occurred all around the South Island of New Zealand during the voyage transits from Nelson, New Zealand to the Antarctic and return. By following acoustic bearings from directional sonobuoys, blue whales were visually detected and confirmed as the source of these sounds. These recordings, together with the historical recordings made northeast of New Zealand, indicate song types that persist over several decades and are indicative of the year-round presence of a population of blue whales that inhabits the waters around New Zealand. Measurements of the four-part vocalizations reveal that blue whale song in this region has changed slowly, but consistently over the past 50 years. The most intense units of these calls were detected as far south as 53°S, which represents a considerable range extension compared to the limited prior data on the spatial distribution of this population.

New Zealand Southern Alps

NASA Image and Video Library

2001-06-20

This anaglyph from the MISR instrument aboard NASA Terra spacecraft shows the rugged Southern Alps extending some 650 kilometers along the western side of New Zealand South Island. 3D glasses are necessary to view this image.

A Closer Look at Completion in Higher Education in New Zealand

ERIC Educational Resources Information Center

Scott, David J.

2009-01-01

New Zealand has one of the lowest reported higher education qualification completion rates in the OECD, significantly below Australia. Why do so many New Zealand students not complete their qualification? This paper looks behind some of the numbers in an attempt to understand better and assess New Zealand's performance compared with Australia and…

The design of Radiation Accident Registry.

PubMed

Chen, Jing; Seely, Bob; Bergman, Lauren; Moir, Deborah

2011-03-01

In order to provide effective monitoring and follow-up on the health effects of individuals accidentally exposed to ionising radiation, a Radiation Accident Registry (RAR) has been designed and constructed as an extension to the existing National Dose Registry (NDR). The RAR has basic functions of recording, monitoring and reporting. This type of registry is able to assist responders in preparing for and managing situations during radiological events and in providing effective follow-up on the long-term health effects of persons exposed to ionising radiation. It is especially important to register radiation-exposed people in vulnerable population groups, such as children and pregnant women, to ensure proper long-term health care and protection. Even though radiation accidents are rare, a registry prepared for such accidents could involve a large population and, in some cases, require lifetime monitoring for individuals. One of the most challenging tasks associated with RAR is the assessment of radiation dose resulting from accidents. In some cases, the assessment of radiation doses to individuals could be a process requiring the involvement of various methods. The development of fast and accurate dose assessment tools will remain a long-term challenge associated with the RAR. To meet this challenge, further research activities in radiation dosimetry for individual monitoring are needed.

Encouraging Health Information Management Graduates to Pursue Cancer Registry Careers.

PubMed

Peterson, Jennifer

2016-01-01

The cancer registry profession has grown dramatically since its inception in 1926. Certified tumor registrars (CTRs) have become an integral part of the cancer care team by providing quality cancer data for research, statistical purposes, public health, and cancer control. In addition, CTRs have been found to be valuable in other cancer and health-related fields. Based on the need for high-quality, accurate data, the National Cancer Registrars Association (NCRA), the certification body for CTRs, has increased the educational requirement for eligibility for the CTR certification exam. This has resulted in fewer individuals who are able to meet the requirements for CTR certification. In addition, the existing cancer registry workforce is, on average, older than other allied health professions, and therefore will face an increasing number of retirements in the next few years. The high demand for CTRs, the decreased pool of CTR-eligible applicants, and the aging cancer registry workforce has resulted in an existing shortage that will only get worse as the population ages and the incidence of cancer increases. Health information management (HIM) students are well suited to pursuing further training in the cancer registry field and gaining the CTR credential. HIM students or new graduates have the needed skill set and education to pursue a cancer registry career. There are many avenues HIM educational programs can take to encourage students to pursue CTR certification and a cancer registry career. Including cancer registry functions in courses throughout the HIM curriculum, bringing in cancer registry speakers, encouraging networking, and promoting the cancer registry field and profession in general are just a few of the methods that HIM programs can use to raise awareness of and promote a cancer registry career to their students. Illinois State University has used these methods and has found them to be successful in encouraging a percentage of their graduates to pursue

Airborne Hazards and Open Burn Pit Registry

MedlinePlus

... Burn Pit Registry requires a common web browser technology to guide you through the registry questionnaire. You may try a different browser, or you may try from a different computer. You may also see this problem if you are in a high security environment where this is disabled by a network policy. ...

Presenting an evaluation model of the trauma registry software.

PubMed

Asadi, Farkhondeh; Paydar, Somayeh

2018-04-01

Trauma is a major cause of 10% death in the worldwide and is considered as a global concern. This problem has made healthcare policy makers and managers to adopt a basic strategy in this context. Trauma registry has an important and basic role in decreasing the mortality and the disabilities due to injuries resulted from trauma. Today, different software are designed for trauma registry. Evaluation of this software improves management, increases efficiency and effectiveness of these systems. Therefore, the aim of this study is to present an evaluation model for trauma registry software. The present study is an applied research. In this study, general and specific criteria of trauma registry software were identified by reviewing literature including books, articles, scientific documents, valid websites and related software in this domain. According to general and specific criteria and related software, a model for evaluating trauma registry software was proposed. Based on the proposed model, a checklist designed and its validity and reliability evaluated. Mentioned model by using of the Delphi technique presented to 12 experts and specialists. To analyze the results, an agreed coefficient of %75 was determined in order to apply changes. Finally, when the model was approved by the experts and professionals, the final version of the evaluation model for the trauma registry software was presented. For evaluating of criteria of trauma registry software, two groups were presented: 1- General criteria, 2- Specific criteria. General criteria of trauma registry software were classified into four main categories including: 1- usability, 2- security, 3- maintainability, and 4-interoperability. Specific criteria were divided into four main categories including: 1- data submission and entry, 2- reporting, 3- quality control, 4- decision and research support. The presented model in this research has introduced important general and specific criteria of trauma registry software

Sarcoptes scabiei on hedgehogs in New Zealand.

PubMed

Kriechbaum, Caroline; Pomroy, William; Gedye, Kristene

2018-03-01

European hedgehogs (Erinaceus europaeus) were introduced into New Zealand from Britain during the period from 1869 to the early 1900s. The only mite found on New Zealand hedgehogs in early studies was Caparinia tripilis, with Sarcoptes scabiei first being reported in 1996. The aim of this study was to investigate the prevalence of Sarcoptes infestation on hedgehogs in New Zealand, the number of mites found and the degree of mange observed. Dead hedgehogs were collected from veterinary clinics, rescue centres, members of the public and from road-kill. Twenty-one (55.3%) of the animals examined had visible skin lesions. Both Caparinia and Sarcoptes mites were identified on microscopic examination with Sarcoptes the most common, being found on over 70% of animals examined (n = 38). The numbers of mites recovered after brushing the head and body ranged from 1 to 5659 (median = 341 mites) with only six animals (22.2%) having fewer than 10 Sarcoptes mites found. Caparinia mites were seen on fewer animals and generally in very low numbers. These findings indicate a change in the mite populations on hedgehogs in New Zealand and that infected animals develop the debilitating hyperkeratotic form of sarcoptic mange without an accompanying hypersensitivity response limiting numbers of mites. Analysis of the cox 1 gene of Sarcoptes from two hedgehogs showed close alignment to sequences derived from a pig with one and from a dog with the second. More work needs to be undertaken to identify the source(s) of the Sarcoptes found on hedgehogs in New Zealand and whether other mammalian hosts may be infected from contact with hedgehogs.

Recovery Competencies for New Zealand Mental Health Workers.

ERIC Educational Resources Information Center

O'Hagan, Mary

This book contains a detailed report of the recovery principles set out in the Mental Health Commission's Blueprint for Mental Health Services in New Zealand. The competencies, endorsed by the New Zealand government, describe what mental health workers need to know about using the recovery approach in their work with people with mental illness.…

The socio-cultural value of New Zealand wilderness

Treesearch

Kerry Wray

2011-01-01

New Zealand's wilderness resource has become iconic on both a national and international scale, and provides an important source of cultural identity for many Kiwis (a colloquial term for a New Zealander). Now, in the early 21st Century, however, social changes such as urbanization, globalization, increasing consumerism, and growing international tourism may be...

GIS in New Zealand Schools: Issues and Prospects

ERIC Educational Resources Information Center

Chalmers, Lex

2006-01-01

There are undoubtedly many parallels between Australia and New Zealand in the history of geographic information system (GIS) in schools. These parallels occur in the social, institutional, professional development, and curricula areas, and each of these topics is considered in this article. In New Zealand at least, there is still a lot that needs…

Conference Proceedings: “Down Syndrome: National Conference on Patient Registries, Research Databases, and Biobanks”

PubMed Central

Oster-Granite, Mary Lou; Parisi, Melissa A.; Abbeduto, Leonard; Berlin, Dorit S.; Bodine, Cathy; Bynum, Dana; Capone, George; Collier, Elaine; Hall, Dan; Kaeser, Lisa; Kaufmann, Petra; Krischer, Jeffrey; Livingston, Michelle; McCabe, Linda L.; Pace, Jill; Pfenninger, Karl; Rasmussen, Sonja A.; Reeves, Roger H.; Rubinstein, Yaffa; Sherman, Stephanie; Terry, Sharon F.; Whitten, Michelle Sie; Williams, Stephen; McCabe, Edward R.B.; Maddox, Yvonne T.

2011-01-01

A December 2010 meeting, “Down Syndrome: National Conference on Patient Registries, Research Databases, and Biobanks,” was jointly sponsored by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH) in Bethesda, MD, and the Global Down Syndrome Foundation (GDSF)/Linda Crnic Institute for Down Syndrome based in Denver, CO. Approximately 70 attendees and organizers from various advocacy groups, federal agencies (Centers for Disease Control and Prevention, and various NIH Institutes, Centers, and Offices), members of industry, clinicians, and researchers from various academic institutions were greeted by Drs. Yvonne Maddox, Deputy Director of NICHD, and Edward McCabe, Executive Director of the Linda Crnic Institute for Down Syndrome. They charged the participants to focus on the separate issues of contact registries, research databases, and biobanks through both podium presentations and breakout session discussions. Among the breakout groups for each of the major sessions, participants were asked to generate responses to questions posed by the organizers concerning these three research resources as they related to Down syndrome and then to report back to the group at large with a summary of their discussions. This report represents a synthesis of the discussions and suggested approaches formulated by the group as a whole. PMID:21835664

Rationale and design of a large registry on renal denervation: the Global SYMPLICITY registry.

PubMed

Böhm, Michael; Mahfoud, Felix; Ukena, Christian; Bauer, Axel; Fleck, Eckart; Hoppe, Uta C; Kintscher, Ulrich; Narkiewicz, Krzysztof; Negoita, Manuela; Ruilope, Luis; Rump, L Christian; Schlaich, Markus; Schmieder, Roland; Sievert, Horst; Weil, Joachim; Williams, Bryan; Zeymer, Uwe; Mancia, Giuseppe

2013-08-22

Hypertension is a global healthcare concern associated with a wide range of comorbidities. The recognition that elevated sympathetic drive plays an important role in the pathogenesis of hypertension led to the use of renal artery denervation to interrupt the efferent and afferent sympathetic nerves between the brain and kidneys to lower blood pressure. Clinical trials of the Symplicity™ renal denervation system have demonstrated that radiofrequency ablation of renal artery nerves is safe and significantly lowers blood pressure in patients with severe resistant (systolic BP >160 mmHg) hypertension. Smaller ancillary studies in hypertensive patients suggest a benefit from renal denervation in a variety of conditions such as chronic kidney disease, glucose intolerance, sleep apnoea and heart failure. The Global SYMPLICITY registry, which incorporates the GREAT SYMPLICITY registry initiated in Germany, is being conducted worldwide to evaluate the safety and efficacy of treatment with the Symplicity renal denervation system in real-world uncontrolled hypertensive patients, looking first at subjects with severe resistant hypertension to confirm the results of prior clinical trials, but then also subjects with a wider range of baseline blood pressure and coexisting comorbidities. The rationale, design and first baseline data from the Global SYMPLICITY registry are presented.

Emerging Voices or Linguistic Silence?: Examining a New Zealand Linguistic Landscape

ERIC Educational Resources Information Center

Macalister, John

2010-01-01

The monolingualism of New Zealand has often been remarked on, but statutory and demographic changes in recent years suggest a shift away from the dominance of the English language. New Zealand now has two official languages, the indigenous Maori language and New Zealand Sign Language, and census data report a decreasing proportion of monolingual…

Educare for Infants and Toddlers in New Zealand Childcare Centres: Is It a Reality and How Important a Component is Joint Attention?

ERIC Educational Resources Information Center

Smith, Anne B.

This study examined the "educare" experiences of infants and toddlers in New Zealand child care centers to evaluate whether those experiences provided opportunities for learning. Subjects were 200 under-2-year-old children (99 boys and 101 girls) from 100 childcare centers, 2 children from each center. Subjects were each observed for 80…

A Suggested Model for Building Robust Biomedical Implants Registries.

PubMed

Aloufi, Bader; Alshagathrah, Fahad; Househ, Mowafa

2017-01-01

Registries are an essential source of information for clinical and non-clinical decision-makers; because they provide evidence for post-market clinical follow-up and early detection of safety signals for biomedical implants. Yet, many of todays biomedical implants registries are facing a variety of challenges relating to a poorly designed dataset, the reliability of inputted data and low clinician and patient participation. The purpose of this paper is to present a best practice model for the implementation and use of biomedical implants registries to monitor the safety and effectiveness of implantable medical devices. Based on a literature review and an analysis of multiple national relevant registries, we identified six factors that address contemporary challenges and are believed to be the keys for building a successful biomedical implants registry, which include: sustainable development, international comparability, data reliability, purposeful design, ease of patient participation, and collaborative development at the national level.

Respiratory-Related Hospitalizations following Prophylaxis in the Canadian Registry for Palivizumab (2005–2012) Compared to Other International Registries

PubMed Central

Mitchell, Ian; Lanctôt, Krista L.

2013-01-01

Respiratory syncytial virus (RSV) infection occurs commonly in infants aged ≤2 years, and severe infection results in hospitalization with accompanying morbidity and mortality. Palivizumab has been available for prophylaxis for the past 15 years. Prospective data on patients who received palivizumab from 2005 to 2012 has been assembled in the Canadian registry (CARESS) to document utilization, compliance, and health outcomes in both hospital and community settings. Long-term data is necessary to evaluate the impact of palivizumab on the incidence of RSV infections, minimize healthcare resources, and identify which infant subpopulations are receiving prophylaxis. A database search was also conducted for similar information from published registries, and hospitalization rates were compared to results from randomized clinical trials (RCTs).Overall hospitalization rates (percent; range) for respiratory-related illnesses and RSV-specific infection in infants who meet standard indications for prophylaxis were 6.6 (3.3–7.7) and 1.55 (0.3–2.06), respectively, in CARESS, which closely aligns with registry data from 4 other countries, despite the former comprising the largest cohort of complex patients internationally. Overall RSV-related hospitalization rates were lower across registries compared to equivalent patients in RCTs. Registry data provides valuable information regarding real-world experience with palivizumab, while facilitating the genesis of new research themes. PMID:23861694

Using a State Birth Registry as a Quality Improvement Tool.

PubMed

Lannon, Carole; Kaplan, Heather C; Friar, Kelly; Fuller, Sandra; Ford, Susan; White, Beth; Besl, John; Paulson, John; Marcotte, Michael; Krew, Michael; Bailit, Jennifer; Iams, Jay

2017-08-01

Background  Birth registry data are universally collected, generating large administrative datasets. However, these data are typically not used for quality improvement (QI) initiatives in perinatal medicine because the quality and timeliness of the information is uncertain. Objective  We sought to identify and address causes of inaccuracy in recording birth registry information so that birth registry data could support statewide obstetrical quality initiatives in Ohio. Study Design  The Ohio Perinatal Quality Collaborative and the Ohio Department of Health Vital Statistics used QI techniques in 15 medium-sized maternity hospitals to identify and remove systemic sources of inaccuracy in birth registry data. The primary outcome was the rate of scheduled deliveries without medical indication between 37 0/7 and 38 6/7 weeks at participating hospitals from birth registry data. Results  Inaccurate birth registry data most commonly resulted from limited communication between clinical and medical record staff. The rate of scheduled births between 37 0/7 and 38 6/7 weeks' gestation without a documented medical indication as recorded in the birth registry declined by 35%. Conclusion  A QI initiative aimed at increasing the accuracy of birth registry information demonstrated the utility of these data for surveillance of perinatal outcomes and has led to ongoing efforts to support birth registrars in submitting accurate data. Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.

Water fluoridation and ethnic inequities in dental caries profiles of New Zealand children aged 5 and 12-13 years: analysis of national cross-sectional registry databases for the decade 2004-2013.

PubMed

Schluter, Philip J; Lee, Martin

2016-02-18

Gross and important inequities have historically existed in the oral health profiles of New Zealand children. Following the New Zealand Government's strategic oral health vision, launched in 2006, nationally collected information from 2004 to 2013 was used to analyze patterns in the prevalence of no obvious decay experience (caries-free) and mean decayed-missing-filled teeth indices over time and by community water fluoridation (CWF) and ethnic classifications in New Zealand children aged 5 years and in school year 8 (generally aged 12-13 years). National aggregated data collected from children's routine child oral health service dental examinations were retrieved, and combined with demographic information from Statistics New Zealand. Children's CWF status was defined by the public water supply status of their school. Crude and standardized population estimates of caries-free prevalence and mean decayed-missing-filled teeth indices over time were derived. Unweighted linear regression models of main effects and two-factor interactions were investigated by age group. Dental examination data were available from 417,318 children aged 5 years and 471,333 year 8 children; of whom 93,715 (22.5 %) and 94,001 (19.9 %), respectively, were Māori. Dental examination coverage of Māori children was significantly less than their non-Māori counterparts (approximately 11 % and 14 % for aged 5 and year 8 children, respectively). Regression analysis revealed that caries-free prevalence and mean decayed-missing-filled teeth indices significantly improved over the study period for both age groups. Significant and sustained differences were observed between Māori and non-Māori children, and between CWF and non-CWF exposed groups. However, a convergence of dental profiles between non-Māori children in CWF and non-CWF regions was observed. Significant and important gains in New Zealand children's oral health profiles appear to have been made over the last decade. Māori children

National Dyslipidemia Registry of the Spanish Arteriosclerosis Society: Current status.

PubMed

Pérez-Calahorra, Sofía; Sánchez-Hernández, Rosa M; Plana, Núria; Valdivielso, Pedro; Civeira, Fernando

Clinical registries are a very effective tool to verify the usual clinical practice, to compare clinical strategies and to improve the knowledge of diagnostic and therapeutic new procedures. The National Registry of Dyslipemias of the Spanish Society of Arteriosclerosis (SEA) is an on-line, retrospective and prospective database where the different Spanish lipid units accredited by the SEA introduce data from patients with disorders of lipid metabolism. The registry was created in 2013, and since then clinical, analytical, genetic and evolutionary data of 4,449 patients have been introduced until June 2017. In the last year the registry has given rise to a considerable number of international publications and there are several more in progress. An ambitious incentive plan for inclusion of patients has been initiated to get the SEA registry as a global reference that helps to improve the knowledge and clinical management of these patients. From the coordinating group of the registry we encourage all SEA partners to collaborate in the multiple forms that the registry allows, and to make it an international scientific reference. Copyright © 2017. Publicado por Elsevier España, S.L.U.

RENAC: National Registry of Congenital Anomalies of Argentina.

PubMed

Groisman, Boris; Bidondo, María Paz; Barbero, Pablo; Gili, Juan A; Liascovich, Rosa

2013-12-01

The National Registry of Congenital Anomalies (Registro Nacional de Anomalías Congénitas, RENAC) is a hospital-based surveillance system for newborn infants with major morphological congenital anomalies (CAs). The objective of this study was to describe the characteristics and operation of the RENAC registry and the prevalence at birth of 56 specifc selected CAs, compared to other registries. The organization of the RENAC registry was initiated in public hospitals with 1000 or more births per year or which are the referral hospitals in a determined health region. Neonatologists are in charge of data collection, and a central coordination department is in charge of encoding, statistical analyses and regular reports. The RENAC registry uses an online forum for data submission and for guidance and interaction regarding the initial management of cases. Between November 1st, 2009 and June 30th, 2012, 98 hospitals were included in the registry, the annual coverage of these hospitals is 65% in the public sector and 35% of births in Argentina. In this period, 294 005 newborn infants were examined, and 5165 cases with major CAs were detected (1.76%; 95% CI: 1.71-1.80). The most frequent CAs were septal heart defects (prevalence per 10 000: 28.6), Down's syndrome (prevalence per 10 000: 19.2), cleft lip +/- palate (prevalence per 10 000: 12), and a set of neural tube defects (prevalence per 10 000: 11.9). The RENAC has reached a high coverage in the public sector and the differences in prevalence with other registries can be related to operational aspects or actual differences, depending on the case. The RENAC deals with the collection, analysis and dissemination of information about CAs in Argentina, and also contributes with local interventions.

The Savant Syndrome Registry: A Preliminary Report.

PubMed

Treffert, Darold A; Rebedew, David L

2015-08-01

A registry has been established to document certain characteristics on a sizeable worldwide sample of individuals with savant syndrome, a rare but remarkable condition in which persons with developmental disabilities, brain injury, or brain disease have some spectacular "islands" of skill or ability that stand in jarring, marked contrast to overall handicap. Of the 319 savants included in the registry, 90% are congenital savants, while 10% are acquired savants. The registry includes individuals from 33 countries, with 70% from the United States or Canada. Sex distribution was 79% male vs. 21% female (4:1). This report summarizes the findings in the congenital savant syndrome category of the registry. Among the individuals with congenital savant syndrome, the most common underlying disability was Autistic Spectrum Disorder (75%); various other central nervous system (CNS) disorders were present in the other 25%. Fifty-five percent possessed a single special skill, while 45% had multiple skills. Music was the most frequent principal skill followed by art, memory, mathematics, calendar calculating, language, visual-spatial/mechanical, athletic, computer, extrasensory perception, and other skills.

Taking the Step to Skill New Zealand. A Guide for Employers.

ERIC Educational Resources Information Center

New Zealand Qualifications Authority, Wellington.

Skill New Zealand is a strategy to raise the skill levels of all New Zealanders, an industry-led approach to skills development that will increase the quantity, quality, and diversity of training in that country. The booklet contains four sections. The first section explains what Skill New Zealand is and why employers should become involved it.…

A web-based intervention for abused women: the New Zealand isafe randomised controlled trial protocol.

PubMed

Koziol-McLain, Jane; Vandal, Alain C; Nada-Raja, Shyamala; Wilson, Denise; Glass, Nancy E; Eden, Karen B; McLean, Christine; Dobbs, Terry; Case, James

2015-01-31

translated into clinical and community practice by multiple health disciplines and advocates. The trial will also provide information about how women in abusive relationships safely access safety information and resources through the Internet. Finally, the trial will inform other research teams on the feasibility and acceptability of fully automated recruitment, eligibility screening, consent and retention procedures. Trial registered on 03 July 2012 on the Australian New Zealand Clinical Trials Registry ACTRN12612000708853 .

A modular approach to disease registry design: successful adoption of an internet-based rare disease registry.

PubMed

Bellgard, Matthew I; Macgregor, Andrew; Janon, Fred; Harvey, Adam; O'Leary, Peter; Hunter, Adam; Dawkins, Hugh

2012-10-01

There is a need to develop Internet-based rare disease registries to support health care stakeholders to deliver improved quality patient outcomes. Such systems should be architected to enable multiple-level access by a range of user groups within a region or across regional/country borders in a secure and private way. However, this functionality is currently not available in many existing systems. A new approach to the design of an Internet-based architecture for disease registries has been developed for patients with clinical and genetic data in geographical disparate locations. The system addresses issues of multiple-level access by key stakeholders, security and privacy. The system has been successfully adopted for specific rare diseases in Australia and is open source. The results of this work demonstrate that it is feasible to design an open source Internet-based disease registry system in a scalable and customizable fashion and designed to facilitate interoperability with other systems. © 2012 Wiley Periodicals, Inc.

REAC/TS Radiation Accident Registry: An Overview

DOE Office of Scientific and Technical Information (OSTI.GOV)

Doran M. Christensen, DO, REAC /TS Associate Director and Staff Physician Becky Murdock, REAC/TS Registry and Health Physics Technician

2012-12-12

Over the past four years, REAC/TS has presented a number of case reports from its Radiation Accident Registry. Victims of radiological or nuclear incidents must meet certain dose criteria for an incident to be categorized as an “accident” and be included in the registry. Although the greatest numbers of “accidents” in the United States that have been entered into the registry involve radiation devices, the greater percentage of serious accidents have involved sealed sources of one kind or another. But if one looks at the kinds of accident scenarios that have resulted in extreme consequence, i.e., death, the greater sharemore » of deaths has occurred in medical settings.« less

Data that empower: The success and promise of CF patient registries.

PubMed

Fink, Aliza K; Loeffler, Deena R; Marshall, Bruce C; Goss, Christopher H; Morgan, Wayne J

2017-11-01

In this article, we describe existing CF registries with a focus on US registry data collected through the CF Foundation Patient Registry (CFFPR) and the Epidemiologic Study of CF (ESCF); highlight what registries have taught us regarding epidemiology of CF; showcase the impact of registries on research and clinical care; and discuss future directions. This manuscript complements the plenary address given by Dr Wayne Morgan at the 2016 North American CF Conference by summarizing the key points from the presentation and providing additional detail and information. © 2017 Wiley Periodicals, Inc.

Overview and key to the New Zealand Cynipoidea (Hymenoptera).

PubMed

Ward, D F

2014-10-30

An overview of Cynipoidea (Hymenoptera) in New Zealand is presented with information on families, genera, and when available, species. Notes on their distribution, biology, and a taxonomic key are provided. The New Zealand cynipoid fauna is very poorly known, with only 11 described species, and five genus-only taxa. The fauna is dominated by introduced species; two species have been deliberately introduced as biological control agents, and at least 12 taxa are definitely or probably adventives. Many of these species are widespread and collected from modified and non-native habitats. New generic records of Figitidae for New Zealand include: Xyalaspis (Anacharitinae), Ganaspis, (Eucoilinae), and Thoreauella (Emargininae), all of which are considered adventives. There are no native species of gall forming wasps (Cynipidae) in New Zealand, and only two native species of Figitidae are present: Anacharis zealandica Ashmead, 1900 and Kleidotoma subantarcticana Yoshimoto, 1964. 

First detection of Wolbachia in the New Zealand biota.

PubMed

Bridgeman, Benjamin; Morgan-Richards, Mary; Wheeler, David; Trewick, Steven A

2018-01-01

Wolbachia is one of the most widespread intracellular bacteria on earth, estimated to infect between 40 and 66% of arthropod species in most ecosystems that have been surveyed. Their significance rests not only in their vast distribution, but also in their ability to modify the reproductive biology of their hosts, which can ultimately affect genetic diversity and speciation of infected populations. Wolbachia has yet to be formally identified in the fauna of New Zealand which has high levels of endemic biodiversity and this represents a gap in our understanding of the global biology of Wolbachia. Using High Throughput Sequencing (HTS) of host DNA in conjunction with traditional molecular techniques we identified six endemic Orthoptera species that were positive for Wolbachia infection. In addition, short-sequence amplification with Wolbachia specific primers applied to New Zealand and introduced invertebrates detected a further 153 individuals positive for Wolbachia. From these short-range DNA amplification products sequence data was obtained for the ftsZ gene region from 86 individuals representing 10 host species. Phylogenetic analysis using the sequences obtained in this study reveals that there are two distinct Wolbachia bacteria lineages in New Zealand hosts belonging to recognised Wolbachia supergroups (A and B). These represent the first described instances of Wolbachia in the New Zealand native fauna, including detection in putative parasitoids of infected Orthoptera suggesting a possible transmission path. Our detection of Wolbachia infections of New Zealand species provides the opportunity to study local transmission of Wolbachia and explore their role in the evolution of New Zealand invertebrates.

Comparison of cancer survival in New Zealand and Australia, 2006-2010.

PubMed

Aye, Phyu S; Elwood, J Mark; Stevanovic, Vladimir

2014-12-19

Previous studies have shown substantially higher mortality rates from cancer in New Zealand compared to Australia, but these studies have not included data on patient survival. This study compares the survival of cancer patients diagnosed in 2006-10 in the whole populations of New Zealand and Australia. Identical period survival methods were used to calculate relative survival ratios for all cancers combined, and for 18 cancers each accounting for more than 50 deaths per year in New Zealand, from 1 to 10 years from diagnosis. Cancer survival was lower in New Zealand, with 5-year relative survival being 4.2% lower in women, and 3.8% lower in men for all cancers combined. Of 18 cancers, 14 showed lower survival in New Zealand; the exceptions, with similar survival in each country, being melanoma, myeloma, mesothelioma, and cervical cancer. For most cancers, the differences in survival were maximum at 1 year after diagnosis, becoming smaller later; however, for breast cancer, the survival difference increased with time after diagnosis. The lower survival in New Zealand, and the higher mortality rates shown earlier, suggest that further improvements in recognition, diagnosis, and treatment of cancer in New Zealand should be possible. As the survival differences are seen soon after diagnosis, issues of early management in primary care and time intervals to diagnosis and treatment may be particularly important.

Parents, Participation, Partnership: Problematising New Zealand Early Childhood Education

ERIC Educational Resources Information Center

Chan, Angel; Ritchie, Jenny

2016-01-01

This article interrogates notions of teacher "partnership with parents" within early childhood care and education settings in the context of Aotearoa (New Zealand). "Te Whariki," the New Zealand early childhood curriculum, clearly positions children's learning and development as being fostered when their families' cultures and…

Medical Specialty Society Sponsored Data Registries – Opportunities in Plastic Surgery

PubMed Central

Hume, Keith M.; Crotty, Catherine A.; Simmons, Christopher J.; Neumeister, Michael W.; Chung, Kevin C.

2014-01-01

Clinical data registries are commonly used worldwide and are implemented for a variety of purposes ranging from physician or facility clinic logs for tracking patients, collecting outcomes data, to measuring quality improvement or safety of medical devices. In the United States, the Food and Drug Administration has used data collected through registries to facilitate the drug and device regulatory process, ongoing surveillance during the product life-cycle, and for disease appraisals. Furthermore, the Centers for Medicare and Medicaid Services, in certain instances, base registry participation and submitting data to registries as factors for reimbursement decisions. The purpose of this article is to discuss the use of clinical data registries, the role that medical specialty societies, in particular the American Society of Plastic Surgeons and The Plastic Surgery Foundation, can have in the development and management of registries, and the opportunities for registry use in Plastic Surgery. As outcomes data are becoming essential measures of quality healthcare delivery, participating in registry development and centralized data collection has become a critical effort for Plastic Surgery to engage in to proactively participate in the national quality and performance measurement agenda. PMID:23806935

New Zealand's tobacco control programme 1985-1998

PubMed Central

Laugesen, M.; Swinburn, B.

2000-01-01

OBJECTIVE—To review the impact of New Zealand's tobacco control programme from 1985 to 1998 on smoking prevalence and tobacco consumption, and to estimate the scope for further reduction.
DESIGN—Country case study; interventions, with outcomes ranked internationally across time.
SETTING—New Zealand 1985-98; for 1985-95, 23 OECD countries.
INTERVENTIONS—Between 1985 and 1998, New Zealand eliminated tobacco advertising, halved the affordability of cigarettes, and reduced smoke exposure in work time by 39%.
MAIN OUTCOME MEASURE—Reduction in adult smoking prevalence and in tobacco products consumption per adult.
RESULTS—Changes in prevalence 1985-98: in adults (aged 15+ years), −17% (from 30% to 25%) but short of the 20% target for 2000; in youth (aged 15-24 years), −20% (from 35% to 28%); and in Maori adults (aged 15+ years), −17% (from 56% in 1981 to 46% in 1996). Changes in consumption 1985-98: tobacco products per adult aged 15+ years, −45% (2493 to 1377 cigarette equivalents); cigarettes smoked per smoker, −34% (22.7 to 15.0 per day). Between 1985 and 1995 New Zealand reduced tobacco products consumption per adult more rapidly than any other OECD country, and reduced youth prevalence more rapidly than most. The acceleration of the decline in cigarette attributable mortality rates in men and in women age 35-69 years averted an additional 1400 deaths between 1985 and 1996. Between 1981 and 1996 smoking prevalence among blue collar workers decreased only marginally, and in 14-15 year olds, rose by one third between 1992 and 1997.
CONCLUSION—In 13 years, New Zealand's tobacco control programme has been successful in almost halving tobacco products consumption, particularly by lowering consumption per smoker. With strong political support for quit campaigns, increased taxation, and the elimination of displays of tobacco products on sale, the consumption could theoretically be halved again in as little as 3-6 years

Mexican registry of pulmonary hypertension: REMEHIP.

PubMed

Sandoval Zarate, Julio; Jerjes-Sanchez, Carlos; Ramirez-Rivera, Alicia; Zamudio, Tomas Pulido; Gutierrez-Fajardo, Pedro; Elizalde Gonzalez, Jose; Leon, Mario Seoane Garcia De; Gamez, Miguel Beltran; Abril, Francisco Moreno Hoyos; Michel, Rodolfo Parra; Aguilar, Humberto Garcia

REMEHIP is a prospective, multicentre registry on pulmonary hypertension. The main objective will be to identify the clinical profile, medical care, therapeutic trends and outcomes in adult and pediatric Mexican patients with well-characterized pulmonary hypertension. REMEHIP a multicenter registry began in 2015 with a planned recruitment time of 12 months and a 4-year follow-up. The study population will comprise a longitudinal cohort study, collecting data on patients with prevalent and incident pulmonary hypertension. Will be included patients of age >2 years and diagnosis of pulmonary hypertension by right heart catheterization within Group 1 and Group 4 of the World Health Organization classification. The structure, data collection and data analysis will be based on quality current recommendations for registries. The protocol has been approved by institutional ethics committees in all participant centers. All patients will sign an informed consent form. Currently in Mexico, there is a need of observational registries that include patients with treatment in the everyday clinical practice so the data could be validated and additional information could be obtained versus the one from the clinical trials. In this way, REMEHIP emerges as a link among randomized clinical trials developed by experts and previous Mexican experience. Copyright © 2016 Instituto Nacional de Cardiología Ignacio Chávez. Publicado por Masson Doyma México S.A. All rights reserved.

Standardization of Questions in Rare Disease Registries: The PRISM Library Project.

PubMed

Richesson, Rachel Lynn; Shereff, Denise; Andrews, James Everett

2012-10-10

Patient registries are often a helpful first step in estimating the impact and understanding the etiology of rare diseases - both requisites for the development of new diagnostics and therapeutics. The value and utility of patient registries rely on the use of both well-constructed structured research questions and relevant answer sets accompanying them. There are currently no clear standards or specifications for developing registry questions, and there are no banks of existing questions to support registry developers. This paper introduces the [Rare Disease] PRISM (Patient Registry Item Specifications and Metadata for Rare Disease) project, a library of standardized questions covering a broad spectrum of rare diseases that can be used to support the development of new registries, including Internet-based registries. A convenience sample of questions was identified from well-established (>5 years) natural history studies in various diseases and from several existing registries. Face validity of the questions was determined by review by many experts (both terminology experts at the College of American Pathologists (CAP) and research and informatics experts at the University of South Florida (USF)) for commonality, clarity, and organization. Questions were re-worded slightly, as needed, to make the full semantics of the question clear and to make the questions generalizable to multiple diseases where possible. Questions were indexed with metadata (structured and descriptive information) using a standard metadata framework to record such information as context, format, question asker and responder, and data standards information. At present, PRISM contains over 2,200 questions, with content of PRISM relevant to virtually all rare diseases. While the inclusion of disease-specific questions for thousands of rare disease organizations seeking to develop registries would present a challenge for traditional standards development organizations, the PRISM library could

Standardization of Questions in Rare Disease Registries: The PRISM Library Project

PubMed Central

Shereff, Denise; Andrews, James Everett

2012-01-01

Background Patient registries are often a helpful first step in estimating the impact and understanding the etiology of rare diseases - both requisites for the development of new diagnostics and therapeutics. The value and utility of patient registries rely on the use of both well-constructed structured research questions and relevant answer sets accompanying them. There are currently no clear standards or specifications for developing registry questions, and there are no banks of existing questions to support registry developers. Objective This paper introduces the [Rare Disease] PRISM (Patient Registry Item Specifications and Metadata for Rare Disease) project, a library of standardized questions covering a broad spectrum of rare diseases that can be used to support the development of new registries, including Internet-based registries. Methods A convenience sample of questions was identified from well-established (>5 years) natural history studies in various diseases and from several existing registries. Face validity of the questions was determined by review by many experts (both terminology experts at the College of American Pathologists (CAP) and research and informatics experts at the University of South Florida (USF)) for commonality, clarity, and organization. Questions were re-worded slightly, as needed, to make the full semantics of the question clear and to make the questions generalizable to multiple diseases where possible. Questions were indexed with metadata (structured and descriptive information) using a standard metadata framework to record such information as context, format, question asker and responder, and data standards information. Results At present, PRISM contains over 2,200 questions, with content of PRISM relevant to virtually all rare diseases. While the inclusion of disease-specific questions for thousands of rare disease organizations seeking to develop registries would present a challenge for traditional standards development

International Briefing 17: Training and Development in New Zealand

ERIC Educational Resources Information Center

Pio, Edwina

2007-01-01

New Zealand is one of the world's most geographically isolated and least crowded countries. New Zealand organizations are increasingly becoming aware of the importance of training and development as the country becomes more technologically sophisticated, multiethnic and older. The country needs higher productivity, business investment and skills…

Climatology of meteorological ``bombs'' in the New Zealand region

NASA Astrophysics Data System (ADS)

Leslie, L. M.; Leplastrier, M.; Buckley, B. W.; Qi, L.

2005-06-01

The purpose of this paper is to present a recently developed climatology of explosively developing south eastern Tasman Sea extra-tropical cyclones, or meteorological “bombs”, using a latitude dependent definition for meteorological bombs based on that of Simmonds and Keay (2000a, b), and Lim and Simmonds (2002). These highly transient systems, which have a damaging impact upon New Zealand, are frequently accompanied by destructive winds, flood rains, and coastal storm surges. Two cases are selected from the climatology and briefly described here. The first case study is the major flood and storm force wind event of June 20 to 21, 2002 that affected the Coromandel Peninsula region of the North Island of New Zealand. The second case was a “supercyclone” bomb that developed well to the southwest of New Zealand region during May 29 to 31, 2004, but which could easily have formed in the New Zealand region with catastrophic consequences. It was well-captured by the new high resolution Quikscat scatterometer instrument.

Health information technology adoption in New Zealand optometric practices.

PubMed

Heidarian, Ahmadali; Mason, David

2013-11-01

Health information technology (HIT) has the potential to fundamentally change the practice of optometry and the relationship between optometrists and patients and to improve clinical outcomes. This paper aims to provide data on how health information technology is currently being used in New Zealand optometric practices. Also this paper aims to explore the potential benefits and barriers to the future adoption of health information technology in New Zealand. One hundred and six New Zealand optometrists were surveyed about their current use of health information technology and about potential benefits and barriers. In addition, 12 semi-structured interviews were carried out with leaders of health information technology in New Zealand optometry. The areas of interest were the current and intended use of HIT, the potential benefits of and barriers to using HIT in optometric offices and the level of investment in health information technology. Nearly all optometrists (98.7 per cent) in New Zealand use computers in their practices and 93.4 per cent of them use a computer in their consulting room. The most commonly used clinical assessment technology in optometric practices in New Zealand was automated perimeter (97.1 per cent), followed by a digital fundus/retinal camera (82.6 per cent) and automated lensometer (62.9 per cent). The pachymeter is the technology that most respondents intended to purchase in the next one to five years (42.6 per cent), followed by a scanning laser ophthalmoscope (36.8 per cent) and corneal topographer (32.9 per cent). The main benefits of using health information technology in optometric practices were improving patient perceptions of ‘state of the art’ practice and providing patients with information and digital images to explain the results of assessment. Barriers to the adoption of HIT included the need for frequent technology upgrades, cost, lack of time for implementation, and training. New Zealand optometrists are using HIT

Outcomes comparison of different surgical strategies for the management of severe aortic valve stenosis: study protocol of a prospective multicentre European registry (E-AVR registry)

PubMed Central

Onorati, Francesco; Gherli, Riccardo; Mariscalco, Giovanni; Girdauskas, Evaldas; Quintana, Eduardo; Santini, Francesco; De Feo, Marisa; Sponga, Sandro; Tozzi, Piergiorgio; Bashir, Mohamad; Perrotti, Andrea; Pappalardo, Aniello; Ruggieri, Vito Giovanni; Santarpino, Giuseppe; Rinaldi, Mauro; Ronaldo, Silva; Nicolini, Francesco

2018-01-01

Introduction Traditional and transcatheter surgical treatments of severe aortic valve stenosis (SAVS) are increasing in parallel with the improved life expectancy. Recent randomised controlled trials (RCTs) reported comparable or non-inferior mortality with transcatheter treatments compared with traditional surgery. However, RCTs have the limitation of being a mirror of the predefined inclusion/exclusion criteria, without reflecting the ‘real clinical world’. Technological improvements have recently allowed the development of minimally invasive surgical accesses and the use of sutureless valves, but their impact on the clinical scenario is difficult to assess because of the monocentric design of published studies and limited sample size. A prospective multicentre registry including all patients referred for a surgical treatment of SAVS (traditional, through full sternotomy; minimally invasive; or transcatheter; with both ‘sutured’ and ‘sutureless’ valves) will provide a ‘real-world’ picture of available results of current surgical options and will help to clarify the ‘grey zones’ of current guidelines. Methods and analysis European Aortic Valve Registry is a prospective observational open registry designed to collect all data from patients admitted for SAVS, with or without coronary artery disease, in 16 cardiac surgery centres located in six countries (France, Germany, Italy, Spain, Switzerland and UK). Patients will be enrolled over a 2-year period and followed up for a minimum of 5 years to a maximum of 10 years after enrolment. Outcome definitions are concordant with Valve Academic Research Consortium-2 criteria and established guidelines. Primary outcome is 5-year all-cause mortality. Secondary outcomes aim at establishing ‘early’ 30-day all-cause and cardiovascular mortality, as well as major morbidity, and ‘late’ cardiovascular mortality, major morbidity, structural and non-structural valve complications, quality of life and

An Evaluation of Characteristics of Environmental Education Practice in New Zealand Schools

ERIC Educational Resources Information Center

Eames, Chris; Cowie, Bronwen; Bolstad, Rachel

2008-01-01

This paper reports on a national evaluation project that investigated characteristics of environmental education (EE) practice in New Zealand schools in 2002-2003. The research included a review of New Zealand and international environmental education literature, a survey of nearly 200 New Zealand schools and case studies of environmental…

Some prehistory of New Zealand intensive care medicine.

PubMed

Trubuhovich, R V

2009-07-01

In taking 1960 as the foundation year for the practice of intensive care medicine in New Zealand, this paper briefly looks into the previous two centuries for some interventions in life-threatening conditions. With the help of descriptions in early 19th century journals and books by perceptive observers, the author focuses on some beliefs and practices of the Maori people during pre-European and later times, as well as aspects of medical treatment in New Zealand for early settlers and their descendents. Dr Laurie Gluckman's book Tangiwai has proved a valuable resource for New Zealand's medical history prior to 1860, while the recent publication of his findings from the examination of coroners' records for Auckland, 1841 to 1864, has been helpful. Drowning is highlighted as a common cause of accidental death, and consideration is given to alcohol as a factor. Following the 1893 foundation of the New Zealand Medical Journal, a limited number of its papers which are historically relevant to today's intensive care are explored: topics include tetanus, laryngeal diphtheria, direct cardiac massage, traumatic shock, thiopentone management for fitting and the ventilatory failure due to poliomyelitis.

Liability for medical malpractice--recent New Zealand developments.

PubMed

Sladden, Nicola; Graydon, Sarah

2009-03-01

Over the last 30 years in New Zealand, civil liability for personal injury including "medical malpractice" has been most notable for its absence. The system of accident compensation and the corresponding bar on personal injury claims has been an interesting contrast to the development of tort law claims for personal injury in other jurisdictions. The Health and Disability Commissioner was appointed in 1994 to protect and promote the rights of health and disability consumers as set out in the Code of Health and Disability Services Consumers' Rights. An important right in the Code, in terms of an equivalent to the common law duty to take reasonable care, is that patients have the right to services of an appropriate standard. Several case studies from the Commissioner's Office are used to illustrate New Zealand's unique medico-legal system and demonstrate how the traditional common law obligation of reasonable care and skill is applied. From an international perspective, the most interesting aspect of liability for medical malpractice in New Zealand is its relative absence - in a tortious sense anyway. This paper will give some general background on the New Zealand legal landscape and discuss recent case studies of interest.

Strengthening Renal Registries and ESRD Research in Africa.

PubMed

Davids, M Razeen; Caskey, Fergus J; Young, Taryn; Balbir Singh, Gillian K

2017-05-01

In Africa, the combination of noncommunicable diseases, infectious diseases, exposure to environmental toxins, and acute kidney injury related to trauma and childbirth are driving an epidemic of chronic kidney disease and end-stage renal disease (ESRD). Good registry data can inform the planning of renal services and can be used to argue for better resource allocation, audit the delivery and quality of care, and monitor the impact of interventions. Few African countries have established renal registries and most have failed owing to resource constraints. In this article we briefly review the burden of chronic kidney disease and ESRD in Africa, and then consider the research questions that could be addressed by renal registries. We describe examples of the impact of registry data and summarize the sparse primary literature on country-wide renal replacement therapy in African countries over the past 20 years. Finally, we highlight some initiatives and opportunities for strengthening research on ESRD and renal replacement therapy in Africa. These include the establishment of the African Renal Registry and the availability of new areas for research. We also discuss capacity building, collaboration, open-access publication, and the strengthening of local journals, all measures that may improve the quantity, visibility, and impact of African research outputs. Copyright © 2017 Elsevier Inc. All rights reserved.

Patient registries: useful tools for clinical research in myasthenia gravis.

PubMed

Baggi, Fulvio; Mantegazza, Renato; Antozzi, Carlo; Sanders, Donald

2012-12-01

Clinical registries may facilitate research on myasthenia gravis (MG) in several ways: as a source of demographic, clinical, biological, and immunological data on large numbers of patients with this rare disease; as a source of referrals for clinical trials; and by allowing rapid identification of MG patients with specific features. Physician-derived registries have the added advantage of incorporating diagnostic and treatment data that may allow comparison of outcomes from different therapeutic approaches, which can be supplemented with patient self-reported data. We report the demographic analysis of MG patients in two large physician-derived registries, the Duke MG Patient Registry, at the Duke University Medical Center, and the INNCB MG Registry, at the Istituto Neurologico Carlo Besta, as a preliminary study to assess the consistency of the two data sets. These registries share a common structure, with an inner core of common data elements (CDE) that facilitate data analysis. The CDEs are concordant with the MG-specific CDEs developed under the National Institute of Neurological Disorders and Stroke Common Data Elements Project. © 2012 New York Academy of Sciences.

Natural Hazard Resilience - A Large-scale Transdisciplinary "National Science Challenge" for New Zealand

NASA Astrophysics Data System (ADS)

Cronin, S. J.

2017-12-01

The National Science Challenges are initiatives to address the most important public science issues that face New Zealand with long-term funding and the combined strength of a coordinated science-sector behind them. Eleven major topics are tackled, across our human, natural and built environments. In the "Resilience Challenge" we address New Zealand's natural hazards. Alongside severe metrological threats, New Zealand also faces one of the highest levels of earthquake and volcanic hazard in the world. Resilience is a hotly discussed concept, here, we take the view: Resilience encapsulates the features of a system to anticipate threats, acknowledge there will be impacts (no matter how prepared we are), quickly pick up the pieces, as well as learn and adapt from the experience to better absorb and rebound from future shocks. Our research must encompass innovation in building and lifelines engineering, planning and regulation, emergency management practice, alongside understanding how our natural hazard systems work, how we monitor them and how our communities/governance/industries can be influenced and encouraged (e.g., via economic incentives) to develop and implement resilience practice. This is a complex interwoven mix of areas and is best addressed through case-study areas where researchers and the users of the research can jointly identify problems and co-develop science solutions. I will highlight some of the strengths and weaknesses of this coordinated approach to an all-hazard, all-country problem, using the example of the Resilience Challenge approach after its first two and a half years of operation. Key issues include balancing investment into high-profile (and often high consequence), but rare hazards against the frequent "monthly" hazards that collectively occupy regional and local governance. Also, it is clear that despite increasingly sophisticated hazard and hazard mitigation knowledge being generated in engineering and social areas, a range of policy

Why People Gamble: A Qualitative Study of Four New Zealand Ethnic Groups

ERIC Educational Resources Information Center

Tse, Samson; Dyall, Lorna; Clarke, Dave; Abbott, Max; Townsend, Sonia; Kingi, Pefi

2012-01-01

In multicultural countries such as New Zealand, it is particularly important that gambling research take into account possible cultural differences. Many New Zealanders come from cultures that do not have a history of gambling, including the Maori (New Zealand indigenous people), Pacific Islanders, and recent migrants. Little research has examined…

Cancer registries in four provinces in Turkey: a case study

PubMed Central

2012-01-01

Background The burden of cancer affects all countries; while high-income countries have the capacity and resources to establish comprehensive cancer control programs, low and middle-income countries have limited resources to develop such programs. This paper examines factors associated with the development of cancer registries in four provinces in Turkey. It looks at the progress made by these registries, the challenges they faced, and the lessons learned. Other countries with similar resources can benefit from the lessons identified in this case study. Methods A mix of qualitative case study methods including key informant interviews, document review and questionnaires was used. Results This case study showed that surveillance systems that accurately report current cancer-related data are essential components of a country’s comprehensive cancer control program. At the initial stages, Turkey established one cancer registry with international support, which was used as a model for other registries. The Ministry of Health recognized the value of the registry data and its contribution to the country’s cancer control program and is supporting sustainability of these registries as a result. Conclusions This study demonstrates how Turkey was able to use resources from multiple sources to enhance its population based cancer registry system in four provinces. With renewed international interest in non-communicable diseases and cancer following the 2011 UN high-level meeting on NCDs, low- and middle- income countries can benefit from Turkey’s experience. Other countries can utilize lessons learned from Turkey as they address cancer burden and establish their own registries. PMID:23110989

15 CFR 995.21 - Registry of data users.

Code of Federal Regulations, 2012 CFR

2012-01-01

... REQUIREMENTS FOR NOAA HYDROGRAPHIC PRODUCTS AND SERVICES CERTIFICATION REQUIREMENTS FOR DISTRIBUTORS OF NOAA HYDROGRAPHIC PRODUCTS Requirements for Certified Distributors and Value Added Distributors of NOAA ENC Products § 995.21 Registry of data users. (a) CED or CEVAD shall maintain a registry of customers receiving NOAA...

15 CFR 995.21 - Registry of data users.

Code of Federal Regulations, 2014 CFR

2014-01-01

... REQUIREMENTS FOR NOAA HYDROGRAPHIC PRODUCTS AND SERVICES CERTIFICATION REQUIREMENTS FOR DISTRIBUTORS OF NOAA HYDROGRAPHIC PRODUCTS Requirements for Certified Distributors and Value Added Distributors of NOAA ENC Products § 995.21 Registry of data users. (a) CED or CEVAD shall maintain a registry of customers receiving NOAA...

15 CFR 995.21 - Registry of data users.

Code of Federal Regulations, 2013 CFR

2013-01-01

... REQUIREMENTS FOR NOAA HYDROGRAPHIC PRODUCTS AND SERVICES CERTIFICATION REQUIREMENTS FOR DISTRIBUTORS OF NOAA HYDROGRAPHIC PRODUCTS Requirements for Certified Distributors and Value Added Distributors of NOAA ENC Products § 995.21 Registry of data users. (a) CED or CEVAD shall maintain a registry of customers receiving NOAA...

Uses and limitations of registry and academic databases.

PubMed

Williams, William G

2010-01-01

A database is simply a structured collection of information. A clinical database may be a Registry (a limited amount of data for every patient undergoing heart surgery) or Academic (an organized and extensive dataset of an inception cohort of carefully selected subset of patients). A registry and an academic database have different purposes and cost. The data to be collected for a database is defined by its purpose and the output reports required for achieving that purpose. A Registry's purpose is to ensure quality care, an Academic Database, to discover new knowledge through research. A database is only as good as the data it contains. Database personnel must be exceptionally committed and supported by clinical faculty. A system to routinely validate and verify data integrity is essential to ensure database utility. Frequent use of the database improves its accuracy. For congenital heart surgeons, routine use of a Registry Database is an essential component of clinical practice. Copyright (c) 2010 Elsevier Inc. All rights reserved.

Registry of Hypogonadism in Men (RHYME): design of a multi-national longitudinal, observational registry of exogenous testosterone use in hypogonadal men.

PubMed

Rosen, Raymond C; Wu, Frederick C W; Behre, Hermann M; Roehrborn, Claus G; Schröder, Fritz H; Siami, Flora S; Martha, Julia F; Finn, Joseph D; Araujo, Andre B

2013-03-01

Despite the prevalence of hypogonadism (HG) and widespread use of testosterone therapy, little is known about the safety/effectiveness of long-term testosterone use. The Registry of Hypogonadism in Men (RHYME) is a multi-national patient registry assessing prostate health and other outcomes associated with testosterone treatment in men. Observational patient disease registry. RHYME is a non-interventional disease registry with longitudinal data collection on a large sample (N = 999) of well-characterized, hypogonadal men aged 18 years or older. The Registry will prospectively evaluate male patients diagnosed with HG, who have not previously been treated with testosterone therapy. Key design features include: (1) broad inclusion/exclusion criteria, (2) standardized central laboratory hormone assays, (3) independent adjudication of prostate biopsies and mortalities, (4) standard of care treatment, (5) comprehensive medical record and questionnaire data at six months and annually post-enrollment and (6) adequate statistical power for assessing prostate endpoints at 36 months. A total of 25 clinical sites in six European countries (Germany, Italy, the Netherlands, Spain, Sweden and the United Kingdom) have completed recruitment for the study. Recruitment was initiated in May 2009, and completed in December 2011. Data collection is ongoing with a minimum of two years of follow-up on all patients.

Big Data in Organ Transplantation: Registries and Administrative Claims

PubMed Central

Massie, Allan B.; Kucirka, Lauren; Segev, Dorry L.

2015-01-01

The field of organ transplantation benefits from large, comprehensive, transplant-specific national datasets available to researchers. In addition to the widely-used OPTN-based registries (the UNOS and SRTR datasets) and USRDS datasets, there are other publicly available national datasets, not specific to transplantation, which have historically been underutilized in the field of transplantation. Of particular interest are the Nationwide Inpatient Sample (NIS) and State Inpatient Databases (SID), produced by the Agency for Healthcare Research and Quality (AHRQ). The United States Renal Data System (USRDS) database provides extensive data relevant to studies of kidney transplantation. Linkage of publicly available datasets to external data sources such as private claims or pharmacy data provides further resources for registry-based research. Although these resources can transcend some limitations of OPTN-based registry data, they come with their own limitations, which must be understood to avoid biased inference. This review discusses different registry-based data sources available in the United States, as well as the proper design and conduct of registry-based research. PMID:25040084

Educational Policy Research in New Zealand: Issues and Challenges.

ERIC Educational Resources Information Center

Wagemaker, H.

As exemplified by New Zealand, the nature of educational policy research is shaped by political and social factors that impinge upon the research environment. Following a description of the educational system and research funding methods, this paper analyzes three areas that affect policy research in New Zealand and addresses relevant social…

History in the New Zealand Curriculum: Discourse Shaping and Key Competencies Possibilities

ERIC Educational Resources Information Center

Hunter, Philippa

2011-01-01

This paper focuses on history in the New Zealand curriculum in light of its seemingly confused curriculum identity despite revision processes of the New Zealand Curriculum (NZC; New Zealand Ministry of Education, 2007). Some thinking about curriculum as a socially constructed political process that teachers can actively engage with sets the scene…

The Transition from Teaching in an International Context Back to New Zealand

ERIC Educational Resources Information Center

Fisher, Anthony; Carlyon, Tracey

2018-01-01

While there can be benefits from having overseas teaching experience, the transition back to New Zealand is not always easy for teachers who have previously gained their initial teaching qualification and certification in New Zealand. Upon returning to New Zealand from teaching in an international context, teachers can find it difficult having…

Follow-up methods for retrospective cohort studies in New Zealand.

PubMed

Fawcett, Jackie; Garrett, Nick; Bates, Michael N

2002-01-01

To define a general methodology for maximising the success of follow-up processes for retrospective cohort studies in New Zealand, and to illustrate an approach to developing country-specific follow-up methodologies. We recently conducted a cohort study of mortality and cancer incidence in New Zealand professional fire fighters. A number of methods were used to trace vital status, including matching with records of the New Zealand Health Information Service (NZHIS), pension records of Work and Income New Zealand (WINZ), and electronic electoral rolls. Non-electronic methods included use of paper electoral rolls and the records of the Registrar of Births Deaths and Marriages. 95% of the theoretical person-years of follow-up of the cohort were traced using these methods. In terms of numbers of cohort members traced to end of follow-up, the most useful tracing methods were fire fighter employment records, the NZHIS, WINZ, and the electronic electoral rolls. The follow-up process used for the cohort study was highly successful. On the basis of this experience, we propose a generic, but flexible, model for follow-up of retrospective cohort studies in New Zealand. Similar models could be constructed for other countries. Successful follow-up of cohort studies is possible in New Zealand using established methods. This should encourage the use of cohort studies for the investigation of epidemiological issues. Similar models for follow-up processes could be constructed for other countries.

Small Country, Big Business? New Zealand as Education Exporter

ERIC Educational Resources Information Center

Martens, Kerstin; Starke, Peter

2008-01-01

This paper discusses New Zealand's role in the global market for tertiary education. The internationalisation and liberalisation of education markets is progressing rapidly in today's globalising world, as reflected by the incorporation of education as a service into the GATS framework. Through the example of New Zealand as a case study for the…

Spirituality in Career from a New Zealand Maori Perspective.

ERIC Educational Resources Information Center

Furbish, Dale S.; Reid, Lynette

New Zealand Maori are the indigenous people of New Zealand Aotearoa, a relatively small nation of 4 million people. The juxtaposition of Maori and European cultures presents an opportunity to contrast the highly spiritual nature of Maori culture with European traditions of linearity and rationality. This contrast can be especially appreciated in…

Building a Joint Force on the Fly: The Relationship of Admiral Aubrey W. Fitch and Lieutenant General Millard F. Harmon

DTIC Science & Technology

2017-06-01

v ABSTRACT The Solomons air campaign is an early example of a combined (New Zealand) and joint (Army, Navy, and Marine Corps) air campaign in...of victory in the Pacific was always at the forefront of their commands. The case of the Solomons air campaign provides an avenue to understanding...Station Norfolk, VA . . . . 26 3 USMC Solomon Islands Campaign Map, 1943. . . . . . . . . . . . . . 37 4 COMAIRSOPAC change of command 20

Cohort profile: the TrueNTH Global Registry - an international registry to monitor and improve localised prostate cancer health outcomes.

PubMed

Evans, Sue M; Millar, Jeremy L; Moore, Caroline M; Lewis, John D; Huland, Hartwig; Sampurno, Fanny; Connor, Sarah E; Villanti, Paul; Litwin, Mark S

2017-11-28

Globally, prostate cancer treatment and outcomes for men vary according to where they live, their race and the care they receive. The TrueNTH Global Registry project was established as an international registry monitoring care provided to men with localised prostate cancer (CaP). Sites with existing CaP databases in Movember fundraising countries were invited to participate in the international registry. In total, 25 Local Data Centres (LDCs) representing 113 participating sites across 13 countries have nominated to contribute to the project. It will collect a dataset based on the International Consortium for Health Outcome Measures (ICHOM) standardised dataset for localised CaP. A governance strategy has been developed to oversee registry operation, including transmission of reversibly anonymised data. LDCs are represented on the Project Steering Committee, reporting to an Executive Committee. A Project Coordination Centre and Data Coordination Centre (DCC) have been established. A project was undertaken to compare existing datasets, understand capacity at project commencement (baseline) to collect the ICHOM dataset and assist in determining the final data dictionary. 21/25 LDCs provided data dictionaries for review. Some ICHOM data fields were well collected (diagnosis, treatment start dates) and others poorly collected (complications, comorbidities). 17/94 (18%) ICHOM data fields were relegated to non-mandatory fields due to poor capture by most existing registries. Participating sites will transmit data through a web interface biannually to the DCC. Recruitment to the TrueNTH Global Registry-PCOR project will commence in late 2017 with sites progressively contributing reversibly anonymised data following ethical review in local regions. Researchers will have capacity to source deidentified data after the establishment phase. Quality indicators are to be established through a modified Delphi approach in later 2017, and it is anticipated that reports on

New Zealand Defense into 2035 -- Future 35 Strategy

DTIC Science & Technology

2012-12-14

language and grammar used is therefore designed to meet United States requirements, rather than those expected in New Zealand. The change of spelling...accessed 15 March 2012). 3New Zealand Government, Ministry of Defence, Defence White Paper 2010, November 2010, http://nzdf.mil.nz/downloads/ pdf ...public-docs/2010/ defence_white_paper_2010. pdf (accessed 15 March 2012), 16. 2 world, and the wider Search and Rescue Zone exponentially increases

The National Film Registry: Acquiring Our Film Heritage.

ERIC Educational Resources Information Center

Ziegler, Roy A.

The National Film Registry, which is primarily a designated list of films to be preserved by the Library of Congress, is also a valuable tool for selecting "films that are culturally, historically, and aesthetically significant." Following a brief discussion of the history and selection process of the National Film Registry, Southeast…

Work and Psychiatric Illness in Aotearoa/New Zealand: Implications for Career Practice

ERIC Educational Resources Information Center

Southern, Annie; Miller, Judi

2012-01-01

This paper aims to examine the influence of Maori culture upon psychiatric service provision in Aotearoa/New Zealand and the implications of this for career counselling of people with experience of mental illness in Aotearoa/New Zealand. The research explored the experiences of a group of women in Aotearoa/New Zealand who have been diagnosed with…

The German Aortic Valve Registry (GARY): a nationwide registry for patients undergoing invasive therapy for severe aortic valve stenosis.

PubMed

Beckmann, A; Hamm, C; Figulla, H R; Cremer, J; Kuck, K H; Lange, R; Zahn, R; Sack, S; Schuler, G C; Walther, T; Beyersdorf, F; Böhm, M; Heusch, G; Funkat, A K; Meinertz, T; Neumann, T; Papoutsis, K; Schneider, S; Welz, A; Mohr, F W

2012-07-01

Background The increasing prevalence of severe aortic valve defects correlates with the increase of life expectancy. For decades, surgical aortic valve replacement (AVR), under the use of extracorporeal circulation, has been the gold standard for treatment of severe aortic valve diseases. In Germany ~12,000 patients receive isolated aortic valve surgery per year. For some time, percutaneous balloon valvuloplasty has been used as a palliative therapeutic option for very few patients. Currently, alternatives for the established surgical procedures such as transcatheter aortic valve implantation (TAVI) have become available, but there are only limited data from randomized studies or low-volume registries concerning long-time outcome. In Germany, the implementation of this new technology into hospital care increased rapidly in the past few years. Therefore, the German Aortic Valve Registry (GARY) was founded in July 2010 including all available therapeutic options and providing data from a large quantity of patients.Methods The GARY is assembled as a complete survey for all invasive therapies in patients with relevant aortic valve diseases. It evaluates the new therapeutic options and compares them to surgical AVR. The model for data acquisition is based on three data sources: source I, the mandatory German database for external performance measurement; source II, a specific registry dataset; and source III, a follow-up data sheet (generated by phone interview). Various procedures will be compared concerning observed complications, mortality, and quality of life up to 5 years after the initial procedure. Furthermore, the registry will enable a compilation of evidence-based indication criteria and, in addition, also a comparison of all approved operative procedures, such as Ross or David procedures, and the use of different mechanical or biological aortic valve prostheses.Results Since the launch of data acquisition in July 2010, almost all institutions performing

The Toxicology Investigators Consortium Case Registry--the 2011 experience.

PubMed

Wiegand, Timothy J; Wax, Paul M; Schwartz, Tayler; Finkelstein, Yaron; Gorodetsky, Rachel; Brent, Jeffrey

2012-12-01

In 2010, the American College of Medical Toxicology established its Case Registry, the Toxicology Investigators Consortium (ToxIC). ToxIC is a prospective registry, which exclusively compiles suspected and confirmed toxic exposure cases cared for at the bedside by medical toxicologists at its participating sites. The Registry aims to fulfill two important gaps in the field: a real-time toxicosurveillance system to identify current poisoning trends and a powerful research tool in toxicology. ToxIC allows extraction of information from medical records making it the most robust multicenter database on chemical toxicities in existence. All cases seen by medical toxicologists at participating institutions were entered in a database. Information characterizing patients entered in 2011 was tabulated. 2010 data was also included so that cumulative total numbers could be described as well. The current report is a summary of the data collected in 2011 in comparison to 2010 entries and also includes cumulative data through December 31st, 2011. During 2011, 28 sites with 49 specific institutions contributed a total of 6,456 cases to the Registry. The total number of cases entered into the registry at the end of 2011 was 10,392. Emergency departments remained the most common source of consultations in 2011, accounting for 53 % of cases. The most common reason for consultation was for pharmaceutical overdoses, which occurred in 48 % of patients, including intentional (37 %) and unintentional (11 %) exposures. The most common classes of agents were sedative-hypnotics (1,492 entries in 23 % of cases), non-opioid analgesics (1,368 cases in 21 % of cases), opioids (17 %), antidepressants (16 %), stimulants/sympathomimetics (12 %), and ethanol (8 %). N-acetylcysteine was the most commonly administered antidote during 2011, similar to 2010, followed by the opioid antagonist naloxone, sodium bicarbonate, physostigmine and flumazenil. Anti-crotalid Fab fragments (CroFab) were

Analysis of Medicine Prices in New Zealand and 16 European Countries.

PubMed

Vogler, Sabine; Kilpatrick, Kate; Babar, Zaheer-Ud-Din

2015-06-01

To compare prices of medicines, both originators and generics, in New Zealand and 16 European countries. Ex-factory price data as of December 2012 from New Zealand and 16 European countries were compared for a basket of 14 medicines, most of which were at least partially funded by the state in the 17 countries. Five medicines had, at least in some countries, generic versions on the market whose prices were also analyzed. Medicine price data for the 16 European countries were provided by the Pharma Price Information service. New Zealand medicine prices were retrieved from the New Zealand Pharmaceutical Schedule. Unit prices converted into euro were compared at the ex-factory price level. For the 14 medicines surveyed, considerable price differences at the ex-factory price level were identified. Within the European countries, prices in Greece, Portugal, the United Kingdom, and Spain ranked at the lower end, whereas prices in Switzerland, Germany, Denmark, and Sweden were at the upper end. The results for New Zealand compared with Europe were variable. New Zealand prices were found in the lowest quartile for five medicines and in the highest quartile for seven other products. Price differences between the originator products and generic versions ranged from 0% to 90% depending on the medicine and the country. Medicine prices varied considerably between European countries and New Zealand as well as among the European countries. These differences are likely to result from national pricing and reimbursement policies. Copyright © 2015 International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Published by Elsevier Inc. All rights reserved.

Next-generation registries: fusion of data for care, and research.

PubMed

Mandl, Kenneth D; Edge, Stephen; Malone, Chad; Marsolo, Keith; Natter, Marc D

2013-01-01

Disease-based registries are a critical tool for electronic data capture of high-quality, gold standard data for clinical research as well as for population management in clinical care. Yet, a legacy of significant operational costs, resource requirements, and poor data liquidity have limited their use. Research registries have engendered more than $3 Billion in HHS investment over the past 17 years. Health delivery systems and Accountable Care Organizations are investing heavily in registries to track care quality and follow-up of patient panels. Despite the investment, regulatory and financial models have often enforced a "single purpose" limitation on each registry, restricting the use of data to a pre-defined set of protocols. The need for cost effective, multi-sourced, and widely shareable registry data sets has never been greater, and requires next-generation platforms to robustly support multi-center studies, comparative effectiveness research, post-marketing surveillance and disease management. This panel explores diverse registry efforts, both academic and commercial, that have been implemented in leading-edge clinical, research, and hybrid use cases. Panelists present their experience in these areas as well as lessons learned, challenges addressed, and near innovations and advances.

Demographics of US pediatric contact dermatitis registry providers.

PubMed

Goldenberg, Alina; Jacob, Sharon E

2015-01-01

Children are as likely as adults to be sensitized and reactive to contact allergens. However, the prevailing data on pediatric allergic contact dermatitis are quantitatively and qualitatively limited because of a narrow geographic localization of data-reporting providers. The aim of the study was to present the first quarter results from the Loma Linda Pediatric Contact Dermatitis Registry focused on registered providers who self-identified as providing care for pediatric allergic contact dermatitis (ACD) within the United States. The US providers were invited to join the registry via completion of an online, secure, 11-question registration survey addressing demographics and clinical practice essentials. The presented results reflect data gathered within the first quarter of registry recruitment; registration is ongoing. Of 169 responders from 48 states, the majority of providers were female (60.4%), academic (55.6%), and dermatologists (76.3%). Based on individual provider averages, the minimum cumulative number of pediatric patch-test evaluations performed each year ranged between 1372 and 3468 children. The Pediatric Contact Dermatitis Registry provides a description of the current leaders in the realm of pediatric ACD and gaps, which are in need of attention. The registry allows for a collaborative effort to exchange information, educate providers, and foster investigative research with the hope of legislation that can reduce the disease burden of ACD in US children.

The ABCs of New Zealand Sign Language: Aerial Spelling.

ERIC Educational Resources Information Center

Forman, Wayne

2003-01-01

Aerial spelling is the term given for the way many people with deafness in New Zealand (NZ) manually represent letters of the alphabet. This article examines the nature and role of aerial spelling in New Zealand Sign Language, particularly that form used by older members of the NZ deaf community. (Contains references.) (Author/CR)

Quality Out-of-School Care in Aotearoa/New Zealand

ERIC Educational Resources Information Center

Walter, Christine

2007-01-01

Research shows that New Zealand has an approximate population of 600,000 children between the ages of five and fourteen years, and that approximately 80,000 of those children attend an out-of-school-care service each year. The New Zealand government allocates approximately $20 million to suitably approved programs, funding for families of lower…

The Italian Registry of Antiphospholipid Antibodies.

PubMed

Finazzi, G

1997-01-01

The clinical importance of antiphospholipid antibodies (APA) derives from their association with a syndrome of venous and arterial thrombosis, recurrent fetal loss and thrombocytopenia known as the antiphospholipid syndrome (APS). The Italian Registry of Antiphospholipid Antibodies was set up in 1989 for the purpose of collecting a large number of patients with lupus anticoagulant (LA) or anticardiolipin antibodies (ACA) for clinical studies in order to obtain more information on the clinical features of APS. The Italian Registry has completed two clinical studies and proposed an international trial on the treatment of APS patients. These activities of the Registry are reviewed herein. Additional information has been obtained from pertinent articles and abstracts published in journals covered by the Science Citation Index and Medline. The first study of the Registry was a retrospective analysis of enrolled patients which showed that: a) the prevalence of thrombosis and thrombocytopenia was similar in cases with idiopathic APA or APA secondary to systemic lupus erythematosus, and b) the rate of thrombosis was significantly reduced in patients with severe thrombocytopenia but not in those with only a mild reduction of the platelet count. The second study was a prospective survey of the natural history of the disease, showing that a) previous thrombosis and ACA titer > 40 units were independent predictors of subsequent vascular complications; b) a history of miscarriage or thrombosis is significantly associated with adverse pregnancy outcome; c) hematological malignancies can develop during follow-up and patients with APA should be considered at increased risk of developing NHL. Thus the possibility of a hematologic neoplastic disease should be borne in mind in the initial evaluation and during the follow-up of these patients. The latest initiative of the Registry was the proposal of an international, randomized clinical trial (WAPS study) aimed at assessing the

Developing and testing a cost data collection instrument for noncommunicable disease registry planning.

PubMed

Subramanian, Sujha; Tangka, Florence; Edwards, Patrick; Hoover, Sonja; Cole-Beebe, Maggie

2016-12-01

This article reports on the methods and framework we have developed to guide economic evaluation of noncommunicable disease registries. We developed a cost data collection instrument, the Centers for Disease Control and Prevention's (CDC's) International Registry Costing Tool (IntRegCosting Tool), based on established economics methods We performed in-depth case studies, site visit interviews, and pilot testing in 11 registries from multiple countries including India, Kenya, Uganda, Colombia, and Barbados to assess the overall quality of the data collected from cancer and cardiovascular registries. Overall, the registries were able to use the IntRegCosting Tool to assign operating expenditures to specific activities. We verified that registries were able to provide accurate estimation of labor costs, which is the largest expenditure incurred by registries. We also identified several factors that can influence the cost of registry operations, including size of the geographic area served, data collection approach, local cost of living, presence of rural areas, volume of cases, extent of consolidation of records to cases, and continuity of funding. Internal and external registry factors reveal that a single estimate for the cost of registry operations is not feasible; costs will vary on the basis of factors that may be beyond the control of the registries. Some factors, such as data collection approach, can be modified to improve the efficiency of registry operations. These findings will inform both future economic data collection using a web-based tool and cost and cost-effectiveness analyses of registry operations in low- and middle-income countries (LMICs) and other locations with similar characteristics. Copyright © 2016 Elsevier Ltd. All rights reserved.

Phylogenetic Position and Subspecies Divergence of the Endangered New Zealand Dotterel (Charadrius obscurus)

PubMed Central

Barth, Julia M. I.; Matschiner, Michael; Robertson, Bruce C.

2013-01-01

The New Zealand Dotterel (Charadrius obscurus), an endangered shorebird of the family Charadriidae, is endemic to New Zealand where two subspecies are recognized. These subspecies are not only separated geographically, with C. o. aquilonius being distributed in the New Zealand North Island and C. o. obscurus mostly restricted to Stewart Island, but also differ substantially in morphology and behavior. Despite these divergent traits, previous work has failed to detect genetic differentiation between the subspecies, and the question of when and where the two populations separated is still open. Here, we use mitochondrial and nuclear markers to address molecular divergence between the subspecies, and apply maximum likelihood and Bayesian methods to place C. obscurus within the non-monophyletic genus Charadrius. Despite very little overall differentiation, distinct haplotypes for the subspecies were detected, thus supporting molecular separation of the northern and southern populations. Phylogenetic analysis recovers a monophyletic clade combining the New Zealand Dotterel with two other New Zealand endemic shorebirds, the Wrybill and the Double-Banded Plover, thus suggesting a single dispersal event as the origin of this group. Divergence dates within Charadriidae were estimated with BEAST 2, and our results indicate a Middle Miocene origin of New Zealand endemic Charadriidae, a Late Miocene emergence of the lineage leading to the New Zealand Dotterel, and a Middle to Late Pleistocene divergence of the two New Zealand Dotterel subspecies. PMID:24205094

Matching colonoscopy and pathology data in population-based registries: development of a novel algorithm and the initial experience of the New Hampshire Colonoscopy Registry.

PubMed

Greene, Mary Ann; Butterly, Lynn F; Goodrich, Martha; Onega, Tracy; Baron, John A; Lieberman, David A; Dietrich, Allen J; Srivastava, Amitabh

2011-08-01

The quality of polyp-level data in a population-based registry depends on the ability to match each polypectomy recorded by the endoscopist to a specific diagnosis on the pathology report. To review impediments encountered in matching colonoscopy and pathology data in a population-based registry. New Hampshire Colonoscopy Registry data from August 2006 to November 2008 were analyzed for prevalence of missing reports, discrepancies between colonoscopy and pathology reports, and the proportion of polyps that could not be matched because of multiple polyps submitted in the same container. New Hampshire Colonoscopy Registry. This study involved all consenting patients during the study period. Develop an algorithm for capturing number, size, location, and histology of polyps and for defining and flagging discrepancies to ensure data quality. The proportion of polyps with no assumption or discrepancy, the proportion of patient records eligible for determining the adenoma detection rate (ADR), and the number of patients with ≥3 adenomas. Only 50% of polyps removed during this period were perfectly matched, with no assumption or discrepancy. Records from only 69.9% and 29.7% of eligible patients could be used to determine the ADR and the number of patients with ≥3 adenomas, respectively. Rates of missing reports may have been higher in the early phase of establishment of the registry. This study highlights the impediments in collecting polyp-level data in a population-based registry and provides useful parameters for evaluating the quality and accuracy of data obtained from such registries. Copyright © 2011 American Society for Gastrointestinal Endoscopy. Published by Mosby, Inc. All rights reserved.

Primary Healthcare-based Diabetes Registry in Puducherry: Design and Methods

PubMed Central

Lakshminarayanan, Subitha; Kar, Sitanshu Sekhar; Gupta, Rajeev; Xavier, Denis; Bhaskar Reddy, S. Vijaya

2017-01-01

Background: Diabetes registries monitor the population prevalence and incidence of diabetes, monitor diabetes control program, provide information of quality of care to health service providers, and provide a sampling frame for interventional studies. This study documents the process of establishing a prospective diabetes registry in a primary health-care setting in Puducherry. Methods: This is a facility-based prospective registry conducted in six randomly selected urban health centers in Puducherry, with enrollment of all known patients with diabetes attending chronic disease clinics. Administrative approvals were obtained from Government Health Services. Manuals for training of medical officers, health-care workers, and case report forms were developed. Diabetes registry was prepared using Epi Info software. Results: In the first phase, demographic characteristics, risk factors, complications, coexisting chronic conditions, lifestyle and medical management, and clinical outcomes were recorded. Around 2177 patients with diabetes have been registered in six Primary Health Centres out of a total of 2948 participants seeking care from chronic disease clinic. Registration coverage ranges from 61% to 105% in these centers. Conclusion: This study has documented methodological details, and learning experiences gained while developing a diabetes registry at the primary health care level and the scope for upscaling to a Management Information System for Diabetes and a State-wide Registry. Improvement in patient care through needs assessment and quality assurance in service delivery is an important theme envisioned by this registry. PMID:28553589

Nurses and the euthanasia debate: reflections from New Zealand.

PubMed

Woods, M; Bickley Asher, J

2015-03-01

Through an examination of the present situation relating to legalizing euthanasia and/or physician-assisted death in New Zealand, this paper is intended to encourage nurses worldwide to ponder about their own position on the ever present topic of assisted dying and euthanasia. In New Zealand, euthanasia remains illegal, but in 2012, the 'End of Life Choice Bill' was put in the ballot for potential selection for consideration by Parliament, later to be withdrawn. However, it is increasingly likely that New Zealand will follow international trends to offer people a choice about how their lives should end, and that such a Bill will be resubmitted in the near future. Undoubtedly, the passage of such legislation would have an impact on the day-to-day practices of nurses who work with dying people. This article has been prepared following a comprehensive review of appropriate literature both in New Zealand and overseas. This article aims to highlight the importance of nursing input into any national debates concerning proposed euthanasia or assisted dying laws. The discussion therefore covers New Zealand's experience of such proposed legislation, that is, the draft Bill itself and the implications for nurses, the history of the assisted dying debate in New Zealand, public and professional opinion, and national and international nursing responses to euthanasia. New Zealand nurses will eventually have an opportunity to make their views on proposed euthanasia legislation known, and what such legislation might mean for their practice. Nurses everywhere should seriously consider their own knowledge and viewpoint on this vitally important topic, and be prepared to respond as both individuals and as part of their professional bodies when the time inevitably arrives. The result will be a better informed set of policies, regulations and legislation leading to a more meaningful and dignified experience for dying people and their families. Nurses need to be fully informed about

The Toxicology Investigators Consortium Case Registry--the 2014 Experience.

PubMed

Rhyee, Sean H; Farrugia, Lynn; Campleman, Sharan L; Wax, Paul M; Brent, Jeffrey

2015-12-01

The Toxicology Investigators Consortium (ToxIC) Case Registry was established in 2010 by the American College of Medical Toxicology. The Registry includes all medical toxicology consultations performed at participating sites. The Registry was queried for all cases entered between January 1 and December 31, 2014. Specific data reviewed for analysis included demographics (age, gender, ethnicity), source of consultation, reasons for consultation, agents involved in toxicological exposures, signs, symptoms, clinical findings, fatalities, and treatment. In 2014, 9172 cases were entered in the Registry across 47 active member sites. Females accounted for 51.1 % of cases. The majority (65.1 %) of cases were adults between the ages of 19 and 65. Caucasians made up the largest identified ethnic group (48.9 %). Most Registry cases originated from the inpatient setting (93.5 %), with a large majority of these consultations coming from the emergency department or inpatient admission services. Intentional and unintentional pharmaceutical exposures continued to be the most frequent reasons for consultation, accounting for 61.7 % of cases. Among cases of intentional pharmaceutical exposure, 62.4 % were associated with a self-harm attempt. Non-pharmaceutical exposures accounted for 14.1 % of Registry cases. Similar to the past years, non-opioid analgesics, sedative-hypnotics, and opioids were the most commonly encountered agents. Clinical signs or symptoms were noted in 81.9 % of cases. There were 89 recorded fatalities (0.97 %). Medical treatment (e.g., antidotes, antivenom, chelators, supportive care) was rendered in 62.3 % of cases. Patient demographics and exposure characteristics in 2014 Registry cases remain similar to prior years. The majority of consultations arose in the acute care setting (emergency department or inpatient) and involved exposures to pharmaceutical products. Among exposures, non-opioid analgesics, sedative/hypnotics, and opioids were the most frequently

Motor neuron disease mortality rates in New Zealand 1992-2013.

PubMed

Cao, Maize C; Chancellor, Andrew; Charleston, Alison; Dragunow, Mike; Scotter, Emma L

2018-05-01

We determined the mortality rates of motor neuron disease (MND) in New Zealand over 22 years from 1992 to 2013. Previous studies have found an unusually high and/or increasing incidence of MND in certain regions of New Zealand; however, no studies have examined MND rates nationwide to corroborate this. Death certificate data coded G12.2 by International Classification of Diseases (ICD)-10 coding, or 335.2 by ICD-9 coding were obtained. These codes specify amyotrophic lateral sclerosis, progressive bulbar palsy, or other motor neuron diseases as the underlying cause of death. Mortality rates for MND deaths in New Zealand were age-standardized to the European Standard Population and compared with rates from international studies that also examined death certificate data and were age-standardized to the same standard population. The age-standardized mortality from MND in New Zealand was 2.3 per 100,000 per year from 1992-2007 and 2.8 per 100,000 per year from 2008-2013. These rates were 3.3 and 4.0 per 100,000 per year, respectively, for the population 20 years and older. The increase in rate between these two time periods was likely due to changes in MND death coding from 2008. Contrary to a previous regional study of MND incidence, nationwide mortality rates did not increase steadily over this time period once aging was accounted for. However, New Zealand MND mortality rate was higher than comparable studies we examined internationally (mean 1.67 per 100,000 per year), suggesting that further analysis of MND burden in New Zealand is warranted.

Czech Registry of Monoclonal Gammopathies - Technical Solution, Data Collection and Visualisation.

PubMed

Brozova, L; Schwarz, D; Snabl, I; Kalina, J; Pavlickova, B; Komenda, M; Jarkovský, J; Němec, P; Horinek, D; Stefanikova, Z; Pour, L; Hájek, R; Maisnar, V

2017-01-01

The Registry of Monoclonal Gammopathies (RMG) was established by the Czech Myeloma Group in 2007. RMG is a registry designed for the collection of clinical data concerning diagnosis, treatment, treatment results and survival of patients with monoclonal gammopathies. Data on patients with monoclonal gammopathy of undetermined significance (MGUS), Waldenström macroglobulinaemia (WM), multiple myeloma (MM) or primary AL ("amyloid light-chain") amyloidosis are collected in the registry. Nineteen Czech centres and four Slovak centres currently contribute to the registry. The registry currently contains records on more than 5,000 patients with MM, almost 3,000 patients with MGUS, 170 patients with WM and 26 patients with primary AL amyloidosis, i.e. more than 8,000 records on patients with monoclonal gammopathies altogether. This paper describes technology employed for the collection, storage and subsequent online visualisation of data. The CLADE-IS platform is introduced as a new system for the collection and storage of data from the registry. The form structure and functions of the new system are described for all diagnoses in general; these functions facilitate data entry to the registry and minimise the error rate in data. Publicly available online visualisations of data on patients with MGUS, WM, MM or primary AL amyloidosis from all Czech or Slovak centres are introduced, together with authenticated visualisations of data on patients with MM from selected centres. The RMG represents a data basis that makes it possible to monitor the disease course in patients with monoclonal gammopathies on the population level.Key words: Registry of Monoclonal Gammopathies - RMG - registries - monoclonal gammopathies - CLADE-IS - data visualisation - database.

15 CFR 995.21 - Registry of data users.

Code of Federal Regulations, 2010 CFR

2010-01-01

... do so by the CED or CEVAD). (b)(1) The registry shall include, but not be limited to: (i) Which NOAA ENC ® cells were provided to each customer; (ii) Edition number of each cell provided; (iii) Updates provided for each cell; (iv) Method of distribution for each customer. (2) The registry may also include...

From a paper-based to an electronic registry in physiotherapy.

PubMed

Buyl, Ronald; Nyssen, Marc

2008-01-01

During the past decade the healthcare industry has evolved from paper-based storage of clinical data into the digital era. Electronic healthcare records play a crucial role to meet the growing need for integrated data-storage and data communication. In this context a new law was issued in Belgium on December 7th, 2005, which requires physiotherapists (but also nurses and speech therapists) to keep an electronic version of the registry. This (electronic) registry contains all physiotherapeutic acts, starting from January 1, 2007. Up until that day, a paper version of the registry had to be created every month.This article describes the development of an electronic version of the registry that not only meets all legal constraints, but also enables to verify the traceability and inalterability of the generated documents, by means of SHA-256 codes. One of the major concerns of the process was that the rationale behind the electronic registry would conform well to the common practice of the physiotherapist. Therefore we opted for a periodic recording of a standardized "image" of the controllable data, in the patient database of the software-system, into the XML registry messages. The proposed XSLT schema can also form a basis for the development of tools that can be used by the controlling authorities. Hopefully the electronic registry for physiotherapists will be a first step towards the future development of a fully integrated electronic physiotherapy record.By means of a certification procedure for the software systems, we succeeded in developing a user friendly system that enables end-users that use a quality labeled software package, to automatically produce all the legally necessary documents concerning the registry. Moreover, we hope that this development will be an incentive for non-users to start working in an electronic way.

Perceptions of policy and political leadership in nursing in New Zealand.

PubMed

Donovan, Donna J; Diers, Donna; Carryer, Jenny

2012-07-01

This qualitative study was focused on the landscape of nursing policy and political leadership in New Zealand. A volunteer sample (N = 18) of nurse leaders (Fellows of the College of Nurses Aotearoa (NZ) Inc) drawn from across the country was interviewed with respect to issues that affect their interest in participating in political action and policy work. The framework of stages of nursing's political development published by Cohen and colleagues (1996) was used as an interview guide. Respondents were asked to describe their own stage of political development, their perception of the political development of New Zealand nurses and nursing organisations at large, and also their thoughts on what could be done to better position nursing in healthcare policy development. In general, respondents agreed that the major nursing organisations in New Zealand (the College of Nurses-- Aotearoa and New Zealand Nurses Organisation [NZNO]) were moving toward increasing policy sophistication. Qualitative content analysis suggested five themes which, taken together, describe nursing's policy/political development in New Zealand: languaging; succession/legacy planning; Tall Poppies and Queen Bees; "it's a small country"; and speaking with one voice. Although limited by sample size, the information collected provides a beginning focus for discussion that can steer New Zealand nursing activities toward the wider involvement of nurse leaders in healthcare policy work on behalf of the discipline.

New Zealand Glaciers

NASA Image and Video Library

2017-03-09

New Zealand contains over 3,000 glaciers, most of which are in the Southern Alps on the South Island. Since 1890, the glaciers have been retreating, with short periods of small advances, as shown in this image from NASA Terra spacecraft. The image cover an area of 39 by 46 km, and are located at 43.7 degrees south, 170 degrees east. http://photojournal.jpl.nasa.gov/catalog/PIA21509

Toxicity of elevated partial pressures of carbon dioxide to invasive New Zealand mudsnails

USGS Publications Warehouse

Nielson, R. Jordan; Moffitt, Christine M.; Watten, Barnaby J.

2012-01-01

The authors tested the efficacy of elevated partial pressures of CO2 to kill invasive New Zealand mudsnails. The New Zealand mudsnails were exposed to 100 kPa at three water temperatures, and the survival was modeled versus dose as cumulative °C-h. We estimated an LD50 of 59.4°C-h for adult and juvenile New Zealand mudsnails. The results suggest that CO2 may be an effective and inexpensive lethal tool to treat substrates, tanks, or materials infested with New Zealand mudsnails.

TOXINZ, the New Zealand Internet poisons information database: The first decade.

PubMed

Fountain, John S; Slaughter, Robin J

2016-06-01

The New Zealand National Poisons Centre has, over a number of years, developed an electronic poisons information database. In 2002, this was released as toxinz™ (University of Otago, Dunedin, New Zealand), an Internet accessible version. The objective of this study is to describe New Zealand subscriber utilisation of TOXINZ with an emphasis on pharmaceutical monographs viewed. A retrospective review was conducted of records of New Zealand subscriber access to TOXINZ monographs during the period 1 January 2003 to 31 December 2012. Telephone enquiry data to the New Zealand National Poisons Centre was also obtained for the same time period. Over the decade, 201 255 TOXINZ monographs were accessed, with annual numbers of documents viewed doubling from 13 718 in 2003 to 28 782 in 2012. Pharmaceuticals were the largest group viewed with 132 316 documents accessed (65.7% of all documents), followed by monographs relating to chemicals 46 061 (22.9%), substances of abuse 6698 (3.3%), plants 6563 (3.3%), supportive care 4668 (2.3%), animals 2553 (1.3%), and other 2396 (1.2%). In regard to the pharmaceuticals, high or rapidly increasing levels of enquiries were identified for venlafaxine, quetiapine, paracetamol, zopiclone and tramadol. Investigation of telephone enquiries to the New Zealand National Poisons Centre showed total poisoning calls increased slightly over the 10 year period, whereas telephone enquiries from hospitals halved. The TOXINZ Internet accessible poisons information database has proved to be a well-utilised addition to the New Zealand National Poisons Centre's service. © 2016 Australasian College for Emergency Medicine and Australasian Society for Emergency Medicine.

Development of Very Long Baseline Interferometry (VLBI) techniques in New Zealand: Array simulation, image synthesis and analysis

NASA Astrophysics Data System (ADS)

Weston, S. D.

2008-04-01

This thesis presents the design and development of a process to model Very Long Base Line Interferometry (VLBI) aperture synthesis antenna arrays. In line with the Auckland University of Technology (AUT) Institute for Radiophysics and Space Research (IRSR) aims to develop the knowledge, skills and experience within New Zealand, extensive use of existing radio astronomical software has been incorporated into the process namely AIPS (Astronomical Imaging Processing System), MIRIAD (a radio interferometry data reduction package) and DIFMAP (a program for synthesis imaging of visibility data from interferometer arrays of radio telescopes). This process has been used to model various antenna array configurations for two proposed New Zealand sites for antenna in a VLBI array configuration with existing Australian facilities and a passable antenna at Scott Base in Antarctica; and the results are presented in an attempt to demonstrate the improvement to be gained by joint trans-Tasman VLBI observation. It is hoped these results and process will assist the planning and placement of proposed New Zealand radio telescopes for cooperation with groups such as the Australian Long Baseline Array (LBA), others in the Pacific Rim and possibly globally; also potential future involvement of New Zealand with the SKA. The developed process has also been used to model a phased building schedule for the SKA in Australia and the addition of two antennas in New Zealand. This has been presented to the wider astronomical community via the Royal Astronomical Society of New Zealand Journal, and is summarized in this thesis with some additional material. A new measure of quality ("figure of merit") for comparing the original model image and final CLEAN images by utilizing normalized 2-D cross correlation is evaluated as an alternative to the existing subjective visual operator image comparison undertaken to date by other groups. This new unit of measure is then used ! in the presentation of the

Nordic Cancer Registries - an overview of their procedures and data comparability.

PubMed

Pukkala, Eero; Engholm, Gerda; Højsgaard Schmidt, Lise Kristine; Storm, Hans; Khan, Staffan; Lambe, Mats; Pettersson, David; Ólafsdóttir, Elínborg; Tryggvadóttir, Laufey; Hakanen, Tiina; Malila, Nea; Virtanen, Anni; Johannesen, Tom Børge; Larønningen, Siri; Ursin, Giske

2018-04-01

The Nordic Cancer Registries are among the oldest population-based registries in the world, with more than 60 years of complete coverage of what is now a combined population of 26 million. However, despite being the source of a substantial number of studies, there is no published paper comparing the different registries. Therefore, we did a systematic review to identify similarities and dissimilarities of the Nordic Cancer Registries, which could possibly explain some of the differences in cancer incidence rates across these countries. We describe and compare here the core characteristics of each of the Nordic Cancer Registries: (i) data sources; (ii) registered disease entities and deviations from IARC multiple cancer coding rules; (iii) variables and related coding systems. Major changes over time are described and discussed. All Nordic Cancer Registries represent a high quality standard in terms of completeness and accuracy of the registered data. Even though the information in the Nordic Cancer Registries in general can be considered more similar than any other collection of data from five different countries, there are numerous differences in registration routines, classification systems and inclusion of some tumors. These differences are important to be aware of when comparing time trends in the Nordic countries.

Did it fall or was it pushed? The contribution of trends in established risk factors to the decline in premature coronary heart disease mortality in New Zealand.

PubMed

Tobias, Martin; Taylor, Richard; Yeh, Li-Chia; Huang, Ken; Mann, Stewart; Sharpe, Norman

2008-04-01

To estimate the contribution of trends in three risk factors--systolic blood pressure (SBP), total blood cholesterol (TBC) and cigarette smoking--to the decline in premature coronary heart disease (CHD) mortality in New Zealand from 1980-2004. Risk factor prevalence data by 10-year age group (35-64 years) and sex was sourced from six national or Auckland regional health surveys and three population censuses (the latter only for smoking). The data were smoothed using two-point moving averages, then further smoothed by fitting quadratic regression equations (SBP and TBC) or splines (smoking). Risk factor/CHD mortality hazard ratios estimated by expert working groups for the World Health Organization Global Burden of Disease Study 2001 were used to translate average annual changes in risk factor prevalences to the corresponding percentage changes in premature CHD mortality. The expected trends in CHD mortality were then compared with the observed trend to estimate the contribution of each risk factor to the decline. Approximately 80% (73% for males, 87% for females) of the decline in premature CHD mortality from 1980 to 2004 is estimated to have resulted from the joint trends in population SBP and TBC distributions and smoking prevalence. Overall, approximately 42%, 36% and 22% of the joint risk factor effect was contributed by trends in SBP, TBC and smoking respectively. Our estimate for the joint risk factor contribution to the CHD mortality decline of 80% exceeds those of two earlier New Zealand studies, but agrees closely with a similar Australian study. This provides an indicator of the scope that still remains for further reduction in CHD mortality through primary and secondary prevention.

Prospective Incidence of Paediatric Inflammatory Bowel Disease in New Zealand in 2015: Results From the Paediatric Inflammatory Bowel Disease in New Zealand (PINZ) Study.

PubMed

Lopez, Robert N; Evans, Helen M; Appleton, Laura; Bishop, Jonathan; Chin, Simon; Mouat, Stephen; Gearry, Richard B; Day, Andrew S

2018-05-01

The global incidence of paediatric inflammatory bowel disease (IBD) is increasing. Much of the evidence attesting to this has arisen from North America and Europe. There is a relative paucity of information on the epidemiology of paediatric IBD in the Southern Hemisphere. The present study aimed to document the prospectively collected incidence of paediatric IBD in New Zealand in 2015. All patients younger than 16 years of age and diagnosed with IBD in New Zealand between 1 January 2015 and 31 December 2015 were identified. Demographic and disease phenotypic details were collected and entered into a secure database. Age-specific population data for New Zealand were obtained and national incidence rates for IBD and its subtypes were calculated. The prospectively calculated incidence of paediatric IBD, Crohn disease, ulcerative colitis (UC), and IBD unclassified in New Zealand in 2015 were 5.2 (95% confidence interval 3.9-6.8), 3.5 (2.4-4.8), 1.0 (0.5-1.8), and 0.7 (0.3-1.4) per 100,000 children, respectively. Incidence rates of paediatric IBD in New Zealand are comparable to the highest rates published in the literature from Western Europe and North America. Ongoing prospective ascertainment of the incidence of paediatric IBD is required to better understand the environmental factors, which are accounting for this increase in disease burden.

The Department of Defense's Persian Gulf War registry year 2000: an examination of veterans' health status.

PubMed

Stuart, John A; Murray, Kelly M; Ursano, Robert J; Wright, Kathleen M

2002-02-01

This study examined the health status of 46,633 Persian Gulf War theater veterans who received full clinical evaluations in the Department of Defense's Gulf War Comprehensive Clinical Evaluation Program (CCEP) as of spring 2000. Clinical data analyzed included demographic information, 15 health symptoms, 19 wartime exposures, and primary and secondary physician-determined medical diagnoses based on International Classification of Diseases, 9th Revision, Clinical Modification, criteria. Findings and discussions are arrayed, by gender, with comparative 1996 data from the Department of Veterans Affairs Health Examination Registry Program. Many veterans reported fewer physical symptoms now than during the time of the Gulf War. Many endorsed symptoms of joint pain, fatigue, weight change, and sleep disturbances. Most reported exposure to diesel fuel and the nerve agent antidote pyridostigmine bromide; far fewer female veterans reported combat involvement. The most frequent primary or secondary diagnosed medical conditions were musculoskeletal/connective tissue diseases, ill-defined conditions, and mental disorders. Female veterans were diagnosed more frequently with mental disorders. Symptom endorsement and diagnosis rates between the CCEP and the Department of Veterans Affairs registry were not dissimilar. Overall, the self-reported general health of veterans with symptoms was much poorer (females had higher rates of "fair to poor" health than males) than that of veterans with no reported symptoms.

Dosing up on Food and Physical Activity: New Zealand Children's Ideas about "Health"

ERIC Educational Resources Information Center

Burrows, Lisette; Wright, Jan; McCormack, Jaleh

2009-01-01

Objective: To investigate New Zealand children's understandings of "health". Design: Secondary analysis of student responses to a task called "Being Healthy" in New Zealand's National Education Monitoring Project. Setting: Year 4 (8-9 year-old) and Year 8 (12-13 year-old) students who took part in New Zealand's National…

Water quality in New Zealand's planted forests: A review

Treesearch

Brenda R. Baillie; Daniel G. Neary

2015-01-01

This paper reviewed the key physical, chemical and biological water quality attributes of surface waters in New Zealand’s planted forests. The purpose was to: a) assess the changes in water quality throughout the planted forestry cycle from afforestation through to harvesting; b) compare water quality from planted forests with other land uses in New Zealand; and c)...

The Toxicology Investigators Consortium Case Registry-the 2015 Experience.

PubMed

Farrugia, Lynn A; Rhyee, Sean H; Campleman, Sharan L; Ruha, Anne-Michelle; Weigand, Timothy; Wax, Paul M; Brent, Jeffrey

2016-09-01

The American College of Medical Toxicology established the Toxicology Investigators Consortium (ToxIC) Case Registry in 2010. The Registry contains all medical toxicology consultations performed at participating sites. The Registry has continued to grow since its inception, and as of December 31, 2015, contains 43,099 cases. This is the sixth annual report of the ToxIC Registry, summarizing the additional 8115 cases entered in 2015. Cases were identified by a query of the Registry for all cases entered between January 1 and December 31, 2015. Specific data reviewed for analysis included demographics (age, race, gender), source of consultation, reason for consultation, agents and agent classes involved in exposures, signs, symptoms, clinical findings, fatalities, and treatment. By the end of 2015, there were 50 active sites, consisting of 101 separate health-care facilities; 51.2 % of cases involved females. Adults between the ages of 19 and 65 made up the majority (64.2 %) of Registry cases. Caucasian race was the most commonly reported (55.6 %); 9.6 % of cases were identified as Hispanic ethnicity. Inpatient and emergency department referrals were by far the most common referral sources (92.9 %). Intentional pharmaceutical exposures remained the most frequent reason for consultation, making up 52.3 % of cases. Of these intentional pharmaceutical exposures, 69 % represented an attempt at self-harm, and 85.6 % of these were a suicide attempt. Nonopioid analgesics, sedative-hypnotics, and antidepressant agents were the most commonly reported agent classes in 2015. Almost one-third of Registry cases involved a diagnosed toxidrome (32.8 %), with a sedative-hypnotic toxidrome being the most frequently described. Significant vital sign abnormalities were recorded in 25.3 % of cases. There were 98 fatalities reported in the Registry (1.2 %). Adverse drug reactions were reported in 4.3 % of cases. Toxicological treatment was given in 65.3 % of cases, with 33.0�

The German national registry for primary immunodeficiencies (PID)

PubMed Central

Gathmann, B; Goldacker, S; Klima, M; Belohradsky, B H; Notheis, G; Ehl, S; Ritterbusch, H; Baumann, U; Meyer-Bahlburg, A; Witte, T; Schmidt, R; Borte, M; Borte, S; Linde, R; Schubert, R; Bienemann, K; Laws, H-J; Dueckers, G; Roesler, J; Rothoeft, T; Krüger, R; Scharbatke, E C; Masjosthusmann, K; Wasmuth, J-C; Moser, O; Kaiser, P; Groß-Wieltsch, U; Classen, C F; Horneff, G; Reiser, V; Binder, N; El-Helou, S M; Klein, C; Grimbacher, B; Kindle, G

2013-01-01

In 2009, a federally funded clinical and research consortium (PID–NET, http://www.pid-net.org) established the first national registry for primary immunodeficiencies (PID) in Germany. The registry contains clinical and genetic information on PID patients and is set up within the framework of the existing European Database for Primary Immunodeficiencies, run by the European Society for Primary Immunodeficiencies. Following the example of other national registries, a central data entry clerk has been employed to support data entry at the participating centres. Regulations for ethics approvals have presented a major challenge for participation of individual centres and have led to a delay in data entry in some cases. Data on 630 patients, entered into the European registry between 2004 and 2009, were incorporated into the national registry. From April 2009 to March 2012, the number of contributing centres increased from seven to 21 and 738 additional patients were reported, leading to a total number of 1368 patients, of whom 1232 were alive. The age distribution of living patients differs significantly by gender, with twice as many males than females among children, but 15% more women than men in the age group 30 years and older. The diagnostic delay between onset of symptoms and diagnosis has decreased for some PID over the past 20 years, but remains particularly high at a median of 4 years in common variable immunodeficiency (CVID), the most prevalent PID. PMID:23607573

The Development of Astronomy and Emergence of Astrophysics in New Zealand

NASA Astrophysics Data System (ADS)

Hearnshaw, John; Orchiston, Wayne

The development of astronomy and astrophysics in New Zealand from the earliest European exploration and settlement to the present day is discussed. The major contributions to astronomy by amateur astronomers are covered, as is the later development of astronomy and astrophysics in New Zealand's universities. The account includes the founding of professional observatories for optical astronomy at Mt. John (belonging to the University of Canterbury) and for radio astronomy at Warkworth (belonging to the Auckland University of Technology). Several major international collaborations in which New Zealand is participating (or has participated) are described, including SALT, MOA, IceCube and SKA. The founding and history of the Carter Observatory in Wellington, of the Stardome Observatory in Auckland (both engaged in astronomical education and outreach) and of the Royal Astronomical Society of New Zealand are briefly covered.

Imported malaria in Auckland, New Zealand.

PubMed

Camburn, Anna E; Ingram, R Joan H; Holland, David; Read, Kerry; Taylor, Susan

2012-11-09

To describe the current malaria situation in Auckland, New Zealand. We collected data on all cases of malaria diagnosed in Auckland from 1st October 2008 to 30th September 2009. Enhanced surveillance was arranged with all hospital and community haematology laboratories in the region. Laboratories notified us when a diagnosis of malaria was made. After obtaining informed consent the patient was asked about their travel, prophylaxis taken and symptoms. Laboratory results were collected. There were 36 cases of malaria in 34 patients. Consent could not be obtained from two patients so data is from 34 cases in 32 patients. (One patient had P.falciparum then later P.vivax, the other had P.vivax and relapsed.) There were 24 males and 8 females with a median age of 21 years (range 6 months to 75 years). Eleven of the 32 were New Zealand residents. 8 of these 11 had travelled to visit friends or relatives (VFR) while 3 were missionaries. In this group 6 had P.falciparum, 4 P.vivax and one had both. Twenty-one of the 32 were new arrivals to New Zealand: 11 refugees and 10 migrants. Malaria in Auckland is seen in new arrivals and VFR travellers, not in tourist travellers.

The Mataró Stroke Registry: a 10-year registry in a community hospital.

PubMed

Palomeras Soler, E; Fossas Felip, P; Casado Ruiz, V; Cano Orgaz, A; Sanz Cartagena, P; Muriana Batiste, D

2015-06-01

A prospective stroke registry leads to improved knowledge of the disease. We present data on the Mataró Hospital Registry. In February-2002 a prospective stroke registry was initiated in our hospital. It includes sociodemographic data, previous diseases, clinical, topographic, etiological and prognostic data. We have analyzed the results of the first 10 years. A total of 2,165 patients have been included, 54.1% male, mean age 73 years. The most frequent vascular risk factor was hypertension (65.4%). Median NIHSS on admission: 3 (interquartile range, 1-8). Stroke subtype: 79.7% ischemic strokes, 10.9% hemorrhagic, and 9.4% TIA. Among ischemic strokes, the etiology was cardioembolic in 26.5%, large-vessel disease in 23.7%, and small-vessel in 22.9%. The most frequent topography of hemorrhages was lobar (47.4%), and 54.8% were attributed to hypertension. The median hospital stay was 8 days. At discharge, 60.7% of patients were able to return directly to their own home, and 52.7% were independent for their daily life activities. After 3 months these percentages were 76.9% and 62.9%, respectively. Hospital mortality was 6.5%, and after 3 months 10.9%. Our patient's profile is similar to those of other series, although the severity of strokes was slightly lower. Length of hospital stay, short-term and medium term disability, and mortality rates are good, if we compare them with other series. Copyright © 2013 Sociedad Española de Neurología. Published by Elsevier España, S.L.U. All rights reserved.

The long locum: health propaganda in New Zealand.

PubMed

Dow, Derek

2003-03-14

Health Department folklore since the 1950s has attributed the rise of health education in New Zealand almost entirely to the efforts of one man, 'Radio Doctor' Harold Turbott. The historical evidence reveals, however, a more extensive commitment by the Health Department, dating back to its foundation in 1900. This paper examines the evolution of health education in New Zealand and concludes that Turbott's role in its development has been overstated, largely at his own instigation.

Problems with non-adherence to antipsychotic medication in Samoan new Zealanders: A literature review

PubMed Central

Ioasa-Martin, Itagia; Moore, Laurie Jo

2012-01-01

This paper explores what is known about adherence to antipsychotic medications in general and the possible reasons for non-adherence in Samoan New Zealanders. Samoan New Zealanders are either Samoan-born immigrants or their descendents born in New Zealand. Clinicians recognize a high prevalence of non-adherence among Samoan New Zealanders. The authors hypothesize that traditional Samoan beliefs play a prominent role in problems with adherence. To investigate this hypothesis, a review of the literature on adherence in Samoan New Zealanders was undertaken. Documents from the Ministry of Health support the hypothesis. To investigate this issue, the Ministry of Health initiated a qualitative research project to examine the nature of Samoan traditional beliefs. The results of this study are summarized. No research had previously been undertaken on adherence in Samoan New Zealanders. In general, there is a lack of research on all aspects of the mental health of Pacific peoples in New Zealand. Literature reviews of adherence research consistently show that interventions that improve adherence address the beliefs, behaviours, and relationships surrounding adherence. This finding supports the author's hypothesis that traditional beliefs play an important role in the problem of adherence. Further definitive study with Samoan New Zealanders is required. PMID:22417230

Te Reo Maori: Indigenous Language Acquisition in the Context of New Zealand English

ERIC Educational Resources Information Center

Reese, Elaine; Keegan, Peter; McNaughton, Stuart; Kingi, Te Kani; Carr, Polly Atatoa; Schmidt, Johanna; Mohal, Jatender; Grant, Cameron; Morton, Susan

2018-01-01

This study assessed the status of te reo Maori, the indigenous language of New Zealand, in the context of New Zealand English. From a broadly representative sample of 6327 two-year-olds ("Growing Up in New Zealand"), 6090 mothers (96%) reported their children understood English, and 763 mothers (12%) reported their children understood…

Presenting an Evaluation Model for the Cancer Registry Software.

PubMed

Moghaddasi, Hamid; Asadi, Farkhondeh; Rabiei, Reza; Rahimi, Farough; Shahbodaghi, Reihaneh

2017-12-01

As cancer is increasingly growing, cancer registry is of great importance as the main core of cancer control programs, and many different software has been designed for this purpose. Therefore, establishing a comprehensive evaluation model is essential to evaluate and compare a wide range of such software. In this study, the criteria of the cancer registry software have been determined by studying the documents and two functional software of this field. The evaluation tool was a checklist and in order to validate the model, this checklist was presented to experts in the form of a questionnaire. To analyze the results of validation, an agreed coefficient of %75 was determined in order to apply changes. Finally, when the model was approved, the final version of the evaluation model for the cancer registry software was presented. The evaluation model of this study contains tool and method of evaluation. The evaluation tool is a checklist including the general and specific criteria of the cancer registry software along with their sub-criteria. The evaluation method of this study was chosen as a criteria-based evaluation method based on the findings. The model of this study encompasses various dimensions of cancer registry software and a proper method for evaluating it. The strong point of this evaluation model is the separation between general criteria and the specific ones, while trying to fulfill the comprehensiveness of the criteria. Since this model has been validated, it can be used as a standard to evaluate the cancer registry software.

The Literacy Debates: What Are the Issues in New Zealand?

ERIC Educational Resources Information Center

Limbrick, Libby

The 1970 International Educational Achievement (IEA) survey placed New Zealand's nine and fourteen year olds first in reading achievement in comparison with all other participating countries. Literacy educators the world over have studied New Zealand's methods and classroom environments, and its approaches to reading/writing instruction have been…

Transforming Knowledge into Wealth in a New Zealand Research University

ERIC Educational Resources Information Center

Spicer, Barry; Dunn, Wendell; Whitcher, Geoff

2006-01-01

This paper describes how New Zealand's leading research university, the University of Auckland, dealt with the issue of transforming knowledge into wealth using a "whole of institution" approach. The context of New Zealand's growth and innovation initiatives is outlined and the University of Auckland's engagement with and institutional…

An Exploratory Study of Collaboration in New Zealand Tertiary Libraries

ERIC Educational Resources Information Center

Finnerty, Colleen

2005-01-01

The shift in policy from market driven behaviour towards a more cooperative tertiary sector is having an effect on New Zealand academic libraries and their relationships. Despite this, there has been no investigation of collaboration specifically targeting New Zealand tertiary libraries. This research project examine the state of collaboration…

Smoking in film in New Zealand: measuring risk exposure

PubMed Central

Gale, Jesse; Fry, Bridget; Smith, Tara; Okawa, Ken; Chakrabarti, Anannya; Ah-Yen, Damien; Yi, Jesse; Townsend, Simon; Carroll, Rebecca; Stockwell, Alannah; Sievwright, Andrea; Dew, Kevin; Thomson, George

2006-01-01

Background Smoking in film is a risk factor for smoking uptake in adolescence. This study aimed to quantify exposure to smoking in film received by New Zealand audiences, and evaluate potential interventions to reduce the quantity and impact of this exposure. Methods The ten highest-grossing films in New Zealand for 2003 were each analysed independently by two viewers for smoking, smoking references and related imagery. Potential interventions were explored by reviewing relevant New Zealand legislation, and scientific literature. Results Seven of the ten films contained at least one tobacco reference, similar to larger film samples. The majority of the 38 tobacco references involved characters smoking, most of whom were male. Smoking was associated with positive character traits, notably rebellion (which may appeal to adolescents). There appeared to be a low threshold for including smoking in film. Legislative or censorship approaches to smoking in film are currently unlikely to succeed. Anti-smoking advertising before films has promise, but experimental research is required to demonstrate cost effectiveness. Conclusion Smoking in film warrants concern from public health advocates. In New Zealand, pre-film anti-smoking advertising appears to be the most promising immediate policy response. PMID:17020623

Smoking in film in New Zealand: measuring risk exposure.

PubMed

Gale, Jesse; Fry, Bridget; Smith, Tara; Okawa, Ken; Chakrabarti, Anannya; Ah-Yen, Damien; Yi, Jesse; Townsend, Simon; Carroll, Rebecca; Stockwell, Alannah; Sievwright, Andrea; Dew, Kevin; Thomson, George

2006-10-04

Smoking in film is a risk factor for smoking uptake in adolescence. This study aimed to quantify exposure to smoking in film received by New Zealand audiences, and evaluate potential interventions to reduce the quantity and impact of this exposure. The ten highest-grossing films in New Zealand for 2003 were each analysed independently by two viewers for smoking, smoking references and related imagery. Potential interventions were explored by reviewing relevant New Zealand legislation, and scientific literature. Seven of the ten films contained at least one tobacco reference, similar to larger film samples. The majority of the 38 tobacco references involved characters smoking, most of whom were male. Smoking was associated with positive character traits, notably rebellion (which may appeal to adolescents). There appeared to be a low threshold for including smoking in film. Legislative or censorship approaches to smoking in film are currently unlikely to succeed. Anti-smoking advertising before films has promise, but experimental research is required to demonstrate cost effectiveness. Smoking in film warrants concern from public health advocates. In New Zealand, pre-film anti-smoking advertising appears to be the most promising immediate policy response.

76 FR 28403 - National Registry of Certified Medical Examiners

Federal Register 2010, 2011, 2012, 2013, 2014

2011-05-17

... [Docket No. FMCSA-2008-0363] RIN 2126-AA97 National Registry of Certified Medical Examiners ACTION: Notice... by training providers in implementing the National Registry of Certified Medical Examiners (National... included minimum training requirements for medical examiners. The draft guidance announced by this notice...

New Zealand environmental standards and energy policies

NASA Astrophysics Data System (ADS)

vant, William N.; McGlinchy, Brian J.

1983-11-01

This paper describes the primary energy resources of New Zealand and their relative importance. It describes the principal legislation that provides environmental protection and public participation with which State and private agencies are bound to comply. The paper then discusses air pollution in further detail and cites three examples where there is cause for concern. By international standards, air pollution is not a serious problem in New Zealand and so the economic consequences have received little attention Two simple examples are cited. A map showing the main centers and the location of facilities referred to in the text is included

Student debt amongst junior doctors in New Zealand; part 2: effects on intentions and workforce.

PubMed

Moore, James; Gale, Jesse; Dew, Kevin; Simmers, Don

2006-02-17

To assess the effects of student debt on the intentions of first-year house officers in relation to location of practice and vocation, and to evaluate the relative importance of incentives to remain practising in New Zealand (NZ). A questionnaire sent to all 296 New Zealand-graduate first-year house officers practicing in New Zealand. The response rate was 53%. Eighty percent of respondents intended to practice in New Zealand for the bulk of their careers; however, 65% of respondents intended to leave New Zealand within 3 years of graduating. The most important factors influencing the decision to leave NZ were overseas travel, financial opportunities, and job/training opportunities. Fifty-five percent of respondents had considered leaving the country, specifically because of the student loan debt. The most important factors influencing vocational intentions were interest, lifestyle, and intellectual challenge. Forty-three percent of respondents stated that their student debt had influenced their intended specialty, and only 9% of respondents indicated their intention to pursue a career in general practice. The highest rated incentives for staying in New Zealand were increased salaries, employer contributions towards student loans, and training opportunities within New Zealand. Student debt influences both emigration and specialty choice intentions of junior doctors in New Zealand. This effect is an unintended but important consequence of our current tertiary education system in New Zealand. These results paint a worrying picture for the junior doctor and general practitioner workforce in New Zealand's future.

Poles Apart: Comparing Trends of Alien Hymenoptera in New Zealand with Europe (DAISIE)

PubMed Central

Ward, Darren; Edney-Browne, Emma

2015-01-01

Developing generalisations of invasive species is an important part of invasion biology. However, trends and generalisations from one part of the world may not necessarily hold elsewhere. We present the first inventory and analysis of all Hymenoptera alien to New Zealand, and compare patterns from New Zealand with those previously published from Europe (DAISIE). Between the two regions there was broad correlation between families with the highest number of alien species (Braconidae, Encyrtidae, Pteromalidae, Eulophidae, Formicidae, Aphelinidae). However, major differences also existed. The number of species alien to New Zealand is higher than for Europe (334 vs 286), and major differences include: i) the much lower proportion of intentionally released species in New Zealand (21% vs 63% in Europe); and ii) the greater proportion of unintentionally introduced parasitoids in New Zealand (71.2% vs 22.6%). The disharmonic ‘island’ nature of New Zealand is shown, as a high proportion of families (36%) have no native representatives, and alien species also represent >10% of the native fauna for many other families. A much larger proportion of alien species are found in urban areas in New Zealand (60%) compared to Europe (~30%), and higher numbers of alien species were present earlier in New Zealand (especially <1950). Differences in the origins of alien species were also apparent. Unlike Europe, the New Zealand data reveals a change in the origins of alien species over time, with an increasing dominance of alien species from Australasia (a regional neighbour) during the past 25 years. We recommend that further effort be made towards the formation, and analysis, of regional inventories of alien species. This will allow a wider range of taxa and regions to be examined for generalisations, and help assess and prioritise the risk posed by certain taxa towards the economy or environment. PMID:26147445

Rheumatic heart disease in indigenous populations--New Zealand experience.

PubMed

Wilson, Nigel

2010-01-01

Rheumatic fever continues unabated among the indigenous Māori and Pacific Island New Zealanders. Ethnic disparities have increased in the past decade. The major success story for disease control has been secondary penicillin prophylaxis with 28-day intramuscular benzathine penicillin with high penicillin delivery rates and low recurrence rates. A landmark study for primary prevention of acute rheumatic fever for group A streptococcal pharyngitis was published in 2009. New Zealand has helped establish the role of echocardiography in acute rheumatic fever, with subclinical carditis incorporated into guidelines as a major criterion of rheumatic fever in high prevalence regions. The rates of mitral valve repair for rheumatic heart disease (RHD) are currently greater than 90% in the children's cardiac unit but remain low in adult cardiac units in New Zealand. This is particularly relevant to women of child bearing age where New Zealand data has shown that pregnancy outcomes for mothers with prosthetic valves on warfarin are poor. There are new initiatives to prevent severe RHD using portable echocardiography by screening school aged children. The prevalence of definite RHD was 2.4% in a large cohort of socially disadvantaged children in South Auckland studied in 2007-2008. Cost benefit models of screening need to be developed. Ongoing research involves international consensus standardisation of RHD patterns, and the need to define the natural history of subclinical RHD. Copyright 2010 Australasian Society of Cardiac and Thoracic Surgeons and the Cardiac Society of Australia and New Zealand. Published by Elsevier B.V. All rights reserved.

Relativism, Values and Morals in the New Zealand Curriculum Framework

ERIC Educational Resources Information Center

Jorgensen, Lone Morris; Ryan, SueAnn

2004-01-01

"The New Zealand Curriculum Framework", 1993, is the official document for teaching, learning and assessment in New Zealand schools. It consists of a set of curriculum statements, which define the learning principles, achievement aims and essential skills for seven learning areas. It also indicates the place of attitudes and values in…

Dental therapists and dental hygienists educated for the New Zealand environment.

PubMed

Coates, Dawn E; Kardos, Thomas B; Moffat, Susan M; Kardos, Rosemary L

2009-08-01

New Zealand has a long history of dental care provided by school dental nurses, now known as dental therapists. The nature of their training courses, although delivered in different centers, had remained relatively constant until 1999 when educational responsibility was transferred to the universities. Dental hygienists were not trained in New Zealand until 1994, with the exception of the New Zealand Army hygienists. Since 2001, the education of both dental therapists and dental hygienists has been the responsibility of the universities. Significant and progressive changes in educational delivery have occurred since then, which have culminated in three-year degree qualifications for dual-trained oral health professionals. Factors influencing this change included increased professionalism associated with the new legislative requirements for registration, workforce shortages, and enhanced educational and clinical practice requirements. The Bachelor of Oral Health degree at the University of Otago has an added emphasis on social sciences and incorporates aspects of learning relating to New Zealand's cultural heritage. We explore in this article the rationale for the introduction of a Bachelor of Oral Health in New Zealand and how it is designed to equip graduates as professionals in oral health.

The development of registries for surveillance of adult lead exposure, 1981 to 1992.

PubMed

Baser, M E

1992-08-01

Since 1981, 15 states have established registries for surveillance of adult lead absorption, primarily based on reports of elevated blood lead levels from clinical laboratories. I review the status of the registries and recommend steps for further development. Companies reported to the New York registry are compared with those cited by the Occupational Safety and Health Administration (OSHA). I present data on US workers and plants with potential lead exposures and blood tests, as well as review registries' reporting requirements. Registries identify many companies not cited by the Occupational Safety and Health Administration, but underreporting occurs because (1) reporting is usually not required from laboratories outside the state, (2) most registries use a blood lead reporting level of 1.21 mumol/L, which excludes many exposed workers, and (3) many companies with potential exposures do not have routine monitoring programs. Registries' reporting requirements and procedures should be standardized, including a blood lead reporting level of 0.72 mumol/L. Elevated blood lead levels should be a reportable condition nationwide, and a comprehensive national surveillance system should be established: clinical laboratories should be required to report cases to those states with lead registries or directly to the national adult lead registry.

Lessons for a national pharmaceuticals strategy in Canada from Australia and New Zealand

PubMed Central

LeLorier, Jacques; Rawson, Nigel SB

2007-01-01

BACKGROUND: The provincial formulary review processes in Canada lead to the slow and inequitable availability of new products. In 2004, the exploration of a national pharmaceuticals strategy (NPS) was announced. The pricing policies of New Zealand and Australia have been suggested as possible models for the NPS. OBJECTIVE: To compare health care indexes and health care use information from Canada, Australia and New Zealand. METHODS: The 2006 Organisation for Economic Co-operation and Development health data were used to compare health and health care indexes from Canada, Australia and New Zealand between 1994 and 2002 to 2004. The principal focus of the evaluation was cardiovascular and respiratory disorders. RESULTS: Although the mortality rate from acute myocardial infarction decreased in each country from 1994, it levelled off in New Zealand in 1997, 1998 and 1999. Between 1994 and 2003, the average length of hospital stay for any cause and for cardiovascular disorders was stable in Australia and Canada, but increased in New Zealand, while the rate of hospital discharges for cardiovascular diseases decreased in Canada and Australia, but strongly increased in New Zealand. Over the same period, sales of cardiovascular drugs decreased in New Zealand, while sharply increasing in Canada and Australia. CONCLUSIONS: Although only circumstantial, our results suggest an association between decreasing cardiovascular drug sales and markers of declining cardiovascular health in New Zealand. Careful consideration must be given to the potential consequences of any model for an NPS in Canada, as well as to opportunities provided for discussion and input from health care professionals and patients. PMID:17622393

Differences in patients' perceptions of Schizophrenia between Māori and New Zealand Europeans.

PubMed

Sanders, Deanna; Kydd, Robert; Morunga, Eva; Broadbent, Elizabeth

2011-06-01

Māori (the Indigenous people of New Zealand) are disproportionately affected by mental illness and experience significantly poorer mental health compared to New Zealand Europeans. It is important to understand cultural differences in patients' ideas about mental illness in treatment settings. The aim of the present study was to investigate differences in illness perceptions between Māori and New Zealand Europeans diagnosed with schizophrenia. A total of 111 users of mental health services (68 Māori, 43 New Zealand European) in the greater Auckland and Northland areas who had been diagnosed with schizophrenia or other psychotic disorder were interviewed using the Brief Illness Perception Questionnaire and the Drug Attitude Inventory. District Health Board staff completed the Global Assessment of Functioning for each patient. Māori with schizophrenia believed that their illness would continue significantly less time than New Zealand European patients did. Chance or spiritual factors were listed as causes of mental illness by only five Māori patients and no New Zealand European patients. Other illness perceptions, as well as attitudes towards medication, were comparable between groups. Across groups, the top perceived causes were drugs/alcohol, family relationships/abuse, and biological causes. Illness perceptions provide a framework to assess patients' beliefs about their mental illness. Differences between Māori and New Zealand European patients' beliefs about their mental illness may be related to traditional Māori beliefs about mental illness. Knowledge of differences in illness perceptions provides an opportunity to design effective clinical interventions for both Māori and New Zealand Europeans.

Lessons for a national pharmaceuticals strategy in Canada from Australia and New Zealand.

PubMed

LeLorier, Jacques; Rawson, Nugek S B

2007-07-01

The provincial formulary review processes in Canada lead to the slow and inequitable availability of new products. In 2004, the exploration of a national pharmaceuticals strategy (NPS) was announced. The pricing policies of New Zealand and Australia have been suggested as possible models for the NPS. To compare health care indexes and health care use information from Canada, Australia and New Zealand. The 2006 Organisation for Economic Co-operation and Development health data were used to compare health and health care indexes from Canada, Australia and New Zealand between 1994 and 2002 to 2004. The principal focus of the evaluation was cardiovascular and respiratory disorders. Although the mortality rate from acute myocardial infarction decreased in each country from 1994, it levelled off in New Zealand in 1997, 1998 and 1999. Between 1994 and 2003, the average length of hospital stay for any cause and for cardiovascular disorders was stable in Australia and Canada, but increased in New Zealand, while the rate of hospital discharges for cardiovascular diseases decreased in Canada and Australia, but strongly increased in New Zealand. Over the same period, sales of cardiovascular drugs decreased in New Zealand, while sharply increasing in Canada and Australia. Although only circumstantial, our results suggest an association between decreasing cardiovascular drug sales and markers of declining cardiovascular health in New Zealand. Careful consideration must be given to the potential consequences of any model for an NPS in Canada, as well as to opportunities provided for discussion and input from health care professionals and patients.

Japanese women's experiences of pharmacological pain relief in New Zealand.

PubMed

Doering, Keiko; Patterson, Jean; Griffiths, Christine R

2014-06-01

In Japan, most women manage labour pain without pharmacological interventions. However, New Zealand statistics show a high percentage of epidural use amongst Asian women. Entonox (a gas mixture of nitrous oxide and oxygen) and pethidine are also available to women in New Zealand. This article investigates how Japanese women in New Zealand respond to the use of pharmacological pain relief in labour. The study was guided by two research questions: (1) How do Japanese women experience and manage labour pain in New Zealand? (2) How do they feel about the use of pharmacological pain relief? Thirteen Japanese women who had given birth in New Zealand were interviewed individually or in a focus group. The conversations were analysed using thematic analysis. Although in Japan very few women use pain relief, nine women received epidural and/or Entonox out of 11 women who experienced labour pain. The contrast between their Japanese cultural expectations and their birth experiences caused some of the women subsequent personal conflict. Japanese women's cultural perspectives and passive attitudes were demonstrated to influence the decision-making process concerning pain relief. It was concluded that understanding Japanese cultural worldviews and approaches to the role of pain in labour would help maternity providers in their provision of appropriate care for Japanese women. Copyright © 2013 Australian College of Midwives. Published by Elsevier Ltd. All rights reserved.

BioSWR--semantic web services registry for bioinformatics.

PubMed

Repchevsky, Dmitry; Gelpi, Josep Ll

2014-01-01

Despite of the variety of available Web services registries specially aimed at Life Sciences, their scope is usually restricted to a limited set of well-defined types of services. While dedicated registries are generally tied to a particular format, general-purpose ones are more adherent to standards and usually rely on Web Service Definition Language (WSDL). Although WSDL is quite flexible to support common Web services types, its lack of semantic expressiveness led to various initiatives to describe Web services via ontology languages. Nevertheless, WSDL 2.0 descriptions gained a standard representation based on Web Ontology Language (OWL). BioSWR is a novel Web services registry that provides standard Resource Description Framework (RDF) based Web services descriptions along with the traditional WSDL based ones. The registry provides Web-based interface for Web services registration, querying and annotation, and is also accessible programmatically via Representational State Transfer (REST) API or using a SPARQL Protocol and RDF Query Language. BioSWR server is located at http://inb.bsc.es/BioSWR/and its code is available at https://sourceforge.net/projects/bioswr/under the LGPL license.

Independent predictors of failure up to 7.5 years after 35 386 single-brand cementless total hip replacements: a retrospective cohort study using National Joint Registry data.

PubMed

Jameson, S S; Baker, P N; Mason, J; Rymaszewska, M; Gregg, P J; Deehan, D J; Reed, M R

2013-06-01

The popularity of cementless total hip replacement (THR) has surpassed cemented THR in England and Wales. This retrospective cohort study records survival time to revision following primary cementless THR with the most common combination (accounting for almost a third of all cementless THRs), and explores risk factors independently associated with failure, using data from the National Joint Registry for England and Wales. Patients with osteoarthritis who had a DePuy Corail/Pinnacle THR implanted between the establishment of the registry in 2003 and 31 December 2010 were included within analyses. There were 35 386 procedures. Cox proportional hazard models were used to analyse the extent to which the risk of revision was related to patient, surgeon and implant covariates. The overall rate of revision at five years was 2.4% (99% confidence interval 2.02 to 2.79). In the final adjusted model, we found that the risk of revision was significantly higher in patients receiving metal-on-metal (MoM: hazard ratio (HR) 1.93, p < 0.001) and ceramic-on-ceramic bearings (CoC: HR 1.55, p = 0.003) compared with the best performing bearing (metal-on-polyethylene). The risk of revision was also greater for smaller femoral stems (sizes 8 to 10: HR 1.82, p < 0.001) compared with mid-range sizes. In a secondary analysis of only patients where body mass index (BMI) data were available (n = 17 166), BMI ≥ 30 kg/m(2) significantly increased the risk of revision (HR 1.55, p = 0.002). The influence of the bearing on the risk of revision remained significant (MoM: HR 2.19, p < 0.001; CoC: HR 2.09, p = 0.001). The risk of revision was independent of age, gender, head size and offset, shell, liner and stem type, and surgeon characteristics. We found significant differences in failure between bearing surfaces and femoral stem size after adjustment for a range of covariates in a large cohort of single-brand cementless THRs. In this study of procedures performed since 2003, hard bearings had

A Biographical Experience of Teacher Education in Aotearoa New Zealand

ERIC Educational Resources Information Center

O'Neill, John

2017-01-01

The article analyses initial teacher education (ITE) policy and practice in Aotearoa New Zealand over forty years. Central to the local ITE context was the incorporation of the "monotechnic" colleges of teacher education into the university sector in the 1990s and 2000s, following New Zealand's structural adjustments to the state…

A Visit to a New Zealand School: Informal but On-Task, Strict but Caring.

ERIC Educational Resources Information Center

Hopfengardner, Jerrold D.; O'Dell, Frank L.

1989-01-01

Describes a visit by two educators to a primary school in Auckland, New Zealand. Discusses the development of children, educational goals, traditions, curricula, administration, and facilities of this New Zealand school. Finds the major difference is the New Zealand school's child-centered approach. (MS)

EPA Facility Registry System (FRS): NEPT

EPA Pesticide Factsheets

This web feature service contains location and facility identification information from EPA's Facility Registry System (FRS) for the subset of facilities that link to the National Environmental Performance Track (NEPT) Program dataset. FRS identifies and geospatially locates facilities, sites or places subject to environmental regulations or of environmental interest. Using vigorous verification and data management procedures, FRS integrates facility data from EPA's national program systems, other federal agencies, and State and tribal master facility records and provides EPA with a centrally managed, single source of comprehensive and authoritative information on facilities. Additional information on FRS is available at the EPA website https://www.epa.gov/enviro/facility-registry-service-frs

EPA Facility Registry Service (FRS): NEI

EPA Pesticide Factsheets

This web feature service contains location and facility identification information from EPA's Facility Registry Service (FRS) for the subset of facilities that link to the National Emissions Inventory (NEI) Program dataset. FRS identifies and geospatially locates facilities, sites or places subject to environmental regulations or of environmental interest. Using vigorous verification and data management procedures, FRS integrates facility data from EPA's national program systems, other federal agencies, and State and tribal master facility records and provides EPA with a centrally managed, single source of comprehensive and authoritative information on facilities. Additional information on FRS is available at the EPA website https://www.epa.gov/enviro/facility-registry-service-frs

Biotribology of artificial hip joints

PubMed Central

Di Puccio, Francesca; Mattei, Lorenza

2015-01-01

Hip arthroplasty can be considered one of the major successes of orthopedic surgery, with more than 350000 replacements performed every year in the United States with a constantly increasing rate. The main limitations to the lifespan of these devices are due to tribological aspects, in particular the wear of mating surfaces, which implies a loss of matter and modification of surface geometry. However, wear is a complex phenomenon, also involving lubrication and friction. The present paper deals with the tribological performance of hip implants and is organized in to three main sections. Firstly, the basic elements of tribology are presented, from contact mechanics of ball-in-socket joints to ultra high molecular weight polyethylene wear laws. Some fundamental equations are also reported, with the aim of providing the reader with some simple tools for tribological investigations. In the second section, the focus moves to artificial hip joints, defining materials and geometrical properties and discussing their friction, lubrication and wear characteristics. In particular, the features of different couplings, from metal-on-plastic to metal-on-metal and ceramic-on-ceramic, are discussed as well as the role of the head radius and clearance. How friction, lubrication and wear are interconnected and most of all how they are specific for each loading and kinematic condition is highlighted. Thus, the significant differences in patients and their lifestyles account for the high dispersion of clinical data. Furthermore, such consideration has raised a new discussion on the most suitable in vitro tests for hip implants as simplified gait cycles can be too far from effective implant working conditions. In the third section, the trends of hip implants in the years from 2003 to 2012 provided by the National Joint Registry of England, Wales and Northern Ireland are summarized and commented on in a discussion. PMID:25621213

Cardiac arrest risk standardization using administrative data compared to registry data.

PubMed

Grossestreuer, Anne V; Gaieski, David F; Donnino, Michael W; Nelson, Joshua I M; Mutter, Eric L; Carr, Brendan G; Abella, Benjamin S; Wiebe, Douglas J

2017-01-01

Methods for comparing hospitals regarding cardiac arrest (CA) outcomes, vital for improving resuscitation performance, rely on data collected by cardiac arrest registries. However, most CA patients are treated at hospitals that do not participate in such registries. This study aimed to determine whether CA risk standardization modeling based on administrative data could perform as well as that based on registry data. Two risk standardization logistic regression models were developed using 2453 patients treated from 2000-2015 at three hospitals in an academic health system. Registry and administrative data were accessed for all patients. The outcome was death at hospital discharge. The registry model was considered the "gold standard" with which to compare the administrative model, using metrics including comparing areas under the curve, calibration curves, and Bland-Altman plots. The administrative risk standardization model had a c-statistic of 0.891 (95% CI: 0.876-0.905) compared to a registry c-statistic of 0.907 (95% CI: 0.895-0.919). When limited to only non-modifiable factors, the administrative model had a c-statistic of 0.818 (95% CI: 0.799-0.838) compared to a registry c-statistic of 0.810 (95% CI: 0.788-0.831). All models were well-calibrated. There was no significant difference between c-statistics of the models, providing evidence that valid risk standardization can be performed using administrative data. Risk standardization using administrative data performs comparably to standardization using registry data. This methodology represents a new tool that can enable opportunities to compare hospital performance in specific hospital systems or across the entire US in terms of survival after CA.

The Dutch EPS Registry: increasing the knowledge of encapsulating peritoneal sclerosis.

PubMed

Korte, M R; Boeschoten, E W; Betjes, M G H

2009-09-01

Encapsulating peritoneal sclerosis (EPS) is a rare condition characterised by fibrotic thickening of the visceral peritoneum, leading to encapsulating of the intestines with partial or total intestinal obstruction. EPS is a serious complication of peritoneal dialysis (PD) with high morbidity and a mortality exceeding 50%. At present, there is uncertainty concerning the incidence and the risk factors involved in the development of EPS. To address these questions a nationwide registry has been initiated. The primary goals of the registry are to record the incidence of EPS and investigate the association of different variables, such as PD duration, medication, dialysis solutions and kidney transplantation with EPS. The registry will improve the knowledge of EPS and will serve to develop guidelines and necessary management strategies. From the registry different research activities can be initiated. A major challenge lies in the establishment of criteria that allow a timely diagnosis of EPS. At present, there are no diagnostic tools that can accurately detect EPS at an early stage. For this reason, besides patients with proven EPS, the clinical suspicion of EPS will be a sufficient criterion for inclusion in the registry. This nationwide EPS registry is currently enrolling patients.

Registries in European post-marketing surveillance: a retrospective analysis of centrally approved products, 2005-2013.

PubMed

Bouvy, Jacoline C; Blake, Kevin; Slattery, Jim; De Bruin, Marie L; Arlett, Peter; Kurz, Xavier

2017-12-01

Regulatory agencies and other stakeholders increasingly rely on data collected through registries to support their decision-making. Data from registries are a cornerstone of post-marketing surveillance for monitoring the use of medicines in clinical practice. This study was aimed at gaining further insight into the European Medicines Agency's (EMA) requests for new registries and registry studies using existing registries and to review the experience gained in their conduct. European Public Assessment Reports were consulted to identify products for which a request for a registry was made as a condition of the marketing authorisation. All centrally authorised products that received a positive opinion of the EMA Committee for Medicinal Products for Human Use between 1 January 2005 and 31 December 2013 were included. Data regarding registry design and experiences were collected from EMA electronic record keeping systems. Of 392 products that received a positive Committee for Medicinal Products for Human Use opinion during 2005-2013, 31 registries were requested for 30 products in total. Sixty-five percent were product registries whereas 35% were disease registries and 71% of the registries had a primary safety objective. Most commonly reported issues with registries were delayed time to start and low patient accrual rates. The delays found in getting new registries up and running support the need to improve the timeliness of data collection in the post-marketing setting. Methodological challenges met in conducting this study highlighted the need for a clarification of definitions and epidemiological concepts around patient registries. The results will inform the EMA Patient Registry initiative to support use of existing patient registries for the post-authorisation benefit-risk monitoring of medicinal products. © 2017 Commonwealth of Australia. Pharmacoepidemiology & Drug Safety © 2017 John Wiley & Sons, Ltd. © 2017 Commonwealth of Australia. Pharmacoepidemiology

Duration of Hemodialysis Following Peritoneal Dialysis Cessation in Australia and New Zealand: Proposal for a Standardized Definition of Technique Failure.

PubMed

Lan, Patrick G; Clayton, Philip A; Johnson, David W; McDonald, Stephen P; Borlace, Monique; Badve, Sunil V; Sud, Kamal; Boudville, Neil

♦ BACKGROUND: Although technique failure is a key outcome in peritoneal dialysis (PD), there is currently no agreement on a uniform definition. We explored different definitions of PD technique failure using data from the Australia and New Zealand Dialysis and Transplant (ANZDATA) Registry. ♦ METHODS: We included 16,612 incident PD patients in Australia and New Zealand from January 1998 to December 2012. Different definitions of technique failure were applied according to the minimum number of days (30, 60, 90, 180, or 365) the patient received hemodialysis after cessation of PD. ♦ RESULTS: Median technique survival varied from 2.0 years with the 30-day definition to 2.4 years with the 365-day definition. For all definitions, the most common causes of technique failure were death, followed by infectious complications. The likelihood of a patient returning to PD within 12 months of technique failure was highest in the 30-day definition (24%), and was very small when using the 180- and 365-day definitions (3% and 0.8%, respectively). Patients whose technique failed due to mechanical reasons were the most likely to return to PD (46% within 12 months using the 30-day definition). ♦ CONCLUSIONS: Both 30- and 180-day definitions have clinical relevance but offer different perspectives with very different prognostic implications for further PD. Therefore, we propose that PD technique failure be defined by a composite endpoint of death or transfer to hemodialysis using both 30-day and 180-day definitions. Copyright © 2016 International Society for Peritoneal Dialysis.

Establishing a Rational New Zealand/United States Defense Relationship

DTIC Science & Technology

1994-01-01

5500 Standard Form 298 (Rev. 2-89) Prescribed by ANSI Std. Z39-16 298-102 1~4CJC SRATGYESSAY WRCITING COMIPETITION ENTRY ESTABLISHING A RATIONAL NEW...AJBAvailability Codjes ALABAMA ABSTRACT TITLE: E lishng a Rational New Zealand/United States Defense Relationship AUTHOR.- Richard J. Newlands, Wing...Current Stetu of the New Zealand/United States Relationship 12 OutstandItg Issues .1 Toward a Rational New Zealan/Unted States Defense Relationship .16

Towards 2015: The Future of Mainline Protestantism in New Zealand

ERIC Educational Resources Information Center

Ward, Kevin

2006-01-01

The percentage of the population involved in the Christian church in New Zealand has been declining since the middle of the 1960s. Most seriously affected has been the mainline Protestant denominations such as Presbyterian, Anglican and Methodist. This article analyses and presents data collected by the National Church Life Survey New Zealand 2001…

Earthquake Hazard and Risk in New Zealand

NASA Astrophysics Data System (ADS)

Apel, E. V.; Nyst, M.; Fitzenz, D. D.; Molas, G.

2014-12-01

To quantify risk in New Zealand we examine the impact of updating the seismic hazard model. The previous RMS New Zealand hazard model is based on the 2002 probabilistic seismic hazard maps for New Zealand (Stirling et al., 2002). The 2015 RMS model, based on Stirling et al., (2012) will update several key source parameters. These updates include: implementation a new set of crustal faults including multi-segment ruptures, updating the subduction zone geometry and reccurrence rate and implementing new background rates and a robust methodology for modeling background earthquake sources. The number of crustal faults has increased by over 200 from the 2002 model, to the 2012 model which now includes over 500 individual fault sources. This includes the additions of many offshore faults in northern, east-central, and southwest regions. We also use the recent data to update the source geometry of the Hikurangi subduction zone (Wallace, 2009; Williams et al., 2013). We compare hazard changes in our updated model with those from the previous version. Changes between the two maps are discussed as well as the drivers for these changes. We examine the impact the hazard model changes have on New Zealand earthquake risk. Considered risk metrics include average annual loss, an annualized expected loss level used by insurers to determine the costs of earthquake insurance (and premium levels), and the loss exceedance probability curve used by insurers to address their solvency and manage their portfolio risk. We analyze risk profile changes in areas with large population density and for structures of economic and financial importance. New Zealand is interesting in that the city with the majority of the risk exposure in the country (Auckland) lies in the region of lowest hazard, where we don't have a lot of information about the location of faults and distributed seismicity is modeled by averaged Mw-frequency relationships on area sources. Thus small changes to the background rates

Marrow donor registry and cord blood bank in Taiwan.

PubMed

Lee, Tsung Dao

2002-08-01

Unrelated Bone marrow transplant was initiated thirty years ago. Though there are over millions of donors registered with the bone marrow registries worldwide, Asian patients rarely find a match with all these donors. Tzu Chi Marrow Donor Registry was established to meet this need. It has become the largest Asian marrow donor registry in the world. With the introduction of high technology to test the HLA of the donors and recipients, the success rate of bone marrow transplant is greatly improved among Asian countries. 50% of blood disease Asian patients who cannot find a bone marrow matched donor will be complemented by the establishment of cord blood banks in Taiwan.

Constructing a Local Potential Participant Registry to Improve Alzheimer's Disease Clinical Research Recruitment.

PubMed

Grill, Joshua D; Hoang, Dan; Gillen, Daniel L; Cox, Chelsea G; Gombosev, Adrijana; Klein, Kirsten; O'Leary, Steve; Witbracht, Megan; Pierce, Aimee

2018-01-01

Potential participant registries are tools to address the challenge of slow recruitment to clinical research. In particular, registries may aid recruitment to secondary prevention clinical trials for Alzheimer's disease (AD), which enroll cognitively normal older individuals meeting specific genetic or biomarker criteria. Evidence of registry effectiveness is sparse, as is guidance on optimal designs or methods of conduct. We report our experiences of developing a novel local potential participant registry that implemented online enrollment and data collection. In the first year of operation, 957 individuals submitted email addresses to the registry, of whom 592 self-reported demographic, family history, and medical data. In addition, registrants provided information related to their interest and willingness to be contacted about studies. Local earned media and community education were the most effective methods of recruitment into the registry. Seventy-six (26%) of 298 registrants contacted about studies in the first year enrolled in those studies. One hundred twenty-nine registrants were invited to enroll in a preclinical AD trial, of whom 25 (18%) screened and 6 were randomized. These results indicate that registries can aid recruitment and provide needed guidance for investigators initiating new local registries.

Description of the rates, trends and surgical burden associated with revision for prosthetic joint infection following primary and revision knee replacements in England and Wales: an analysis of the National Joint Registry for England, Wales, Northern Ireland and the Isle of Man

PubMed Central

Lenguerrand, Erik; Whitehouse, Michael R; Beswick, Andrew D; Toms, Andrew D; Porter, Martyn L; Blom, Ashley W

2017-01-01

Objectives To describe the prevalence rates of revision surgery for the treatment of prosthetic joint infection (PJI) for patients undergoing knee replacement, their time trends, the cumulative incidence function of revision for PJI and estimate the burden of PJI at health service level. Design We analysed revision knee replacements performed due to a diagnosis of PJI and the linked index procedures recorded in the National Joint Registry from 2003 to 2014 for England and Wales. The cohort analysed consisted of 679 010 index primary knee replacements, 33 920 index revision knee replacements and 8247 revision total knee replacements performed due to a diagnosis of PJI. The prevalence rates, their time trends investigated by time from index surgery to revision for PJI, cumulative incidence functions and the burden of PJI (total procedures) were calculated. Overall linear trends were investigated with log-linear regression. Results The incidence of revision total knee replacement due to PJI at 2 years was 3.2/1000 following primary and 14.4/1000 following revision knee replacement, respectively. The prevalence of revision due to PJI in the 3 months following primary knee replacement has risen by 2.5-fold (95% CI 1.2 to 5.3) from 2005 to 2013 and 7.5-fold (95% CI 1.0 to 56.1) following revision knee replacement. Over 1000 procedures per year are performed as a consequence of knee PJI, an increase of 2.8 from 2005 to 2013. Overall, 75% of revisions were two-stage with an increase in use of single-stage from 7.9% in 2005 to 18.8% in 2014. Conclusions Although the risk of revision due to PJI following knee replacement is low, it is rising, and coupled with the established and further predicted increased incidence of both primary and revision knee replacements, this represents an increasing and substantial treatment burden for orthopaedic service delivery in England and Wales. This has implications for future service design and the funding of individual and

Professional Development for E-Learning: Researching a Strategy for New Zealand's Tertiary Education Sector

ERIC Educational Resources Information Center

Shephard, Kerry; Mansvelt, Juliana; Stein, Sarah; Suddaby, Gordon; Harris, Irene; O'Hara, Duncan

2011-01-01

This collaborative research project devised a framework to support professional development for e-learning within New Zealand's diverse and integrated tertiary education sector. The research was supported by New Zealand's Ministry of Education. The research included reviews of developments in the United Kingdom, Australia and New Zealand and a…

Epidemiology of hypospadias in Europe: a registry-based study.

PubMed

Bergman, Jorieke E H; Loane, Maria; Vrijheid, Martine; Pierini, Anna; Nijman, Rien J M; Addor, Marie-Claude; Barisic, Ingeborg; Béres, Judit; Braz, Paula; Budd, Judith; Delaney, Virginia; Gatt, Miriam; Khoshnood, Babak; Klungsøyr, Kari; Martos, Carmen; Mullaney, Carmel; Nelen, Vera; Neville, Amanda J; O'Mahony, Mary; Queisser-Luft, Annette; Randrianaivo, Hanitra; Rissmann, Anke; Rounding, Catherine; Tucker, David; Wellesley, Diana; Zymak-Zakutnia, Natalya; Bakker, Marian K; de Walle, Hermien E K

2015-12-01

Hypospadias is a common congenital malformation. The prevalence of hypospadias has a large geographical variation, and recent studies have reported both increasing and decreasing temporal trends. It is unclear whether hypospadias prevalence is associated with maternal age. To analyze the prevalence and trends of total hypospadias, isolated hypospadias, hypospadias with multiple congenital anomalies, hypospadias with a known cause, and hypospadias severity subtypes in Europe over a 10-year period and to investigate whether maternal age is associated with hypospadias. We included all children with hypospadias born from 2001 to 2010 who were registered in 23 EUROCAT registries. Information on the total number of births and maternal age distribution for the registry population was also provided. We analyzed the total prevalence of hypospadias and relative risks by maternal age. From 2001 to 2010, 10,929 hypospadias cases were registered in 5,871,855 births, yielding a total prevalence of 18.61 per 10,000 births. Prevalence varied considerably between different registries, probably due to differences in ascertainment of hypospadias cases. No significant temporal trends were observed with the exceptions of an increasing trend for anterior and posterior hypospadias and a decreasing trend for unspecified hypospadias. After adjusting for registry effects, maternal age was not significantly associated with hypospadias. Total hypospadias prevalence was stable in 23 EUROCAT registries from 2001 to 2010 and was not significantly influenced by maternal age.

Construction and management of ARDS/sepsis registry with REDCap.

PubMed

Pang, Xiaoqing; Kozlowski, Natascha; Wu, Sulong; Jiang, Mei; Huang, Yongbo; Mao, Pu; Liu, Xiaoqing; He, Weiqun; Huang, Chaoyi; Li, Yimin; Zhang, Haibo

2014-09-01

The study aimed to construct and manage an acute respiratory distress syndrome (ARDS)/sepsis registry that can be used for data warehousing and clinical research. The workflow methodology and software solution of research electronic data capture (REDCap) was used to construct the ARDS/sepsis registry. Clinical data from ARDS and sepsis patients registered to the intensive care unit (ICU) of our hospital formed the registry. These data were converted to the electronic case report form (eCRF) format used in REDCap by trained medical staff. Data validation, quality control, and database management were conducted to ensure data integrity. The clinical data of 67 patients registered to the ICU between June 2013 and December 2013 were analyzed. Of the 67 patients, 45 (67.2%) were classified as sepsis, 14 (20.9%) as ARDS, and eight (11.9%) as sepsis-associated ARDS. The patients' information, comprising demographic characteristics, medical history, clinical interventions, daily assessment, clinical outcome, and follow-up data, was properly managed and safely stored in the ARDS/sepsis registry. Data efficiency was guaranteed by performing data collection and data entry twice weekly and every two weeks, respectively. The ARDS/sepsis database that we constructed and manage with REDCap in the ICU can provide a solid foundation for translational research on the clinical data of interest, and a model for development of other medical registries in the future.

Medical practice in New Zealand 1769-1860.

PubMed

Lawrenson, Ross

2004-06-01

New Zealand was discovered by Captain Cook in 1769. Over the next ninety years, increasing numbers of medical practitioners visited and began to settle in what became a British colony. The first medical visitors were usually naval surgeons or served on board whaling ships. The major influx of doctors occurred at the behest of the New Zealand Company between 1840 and 1848, although Christian missionaries, army doctors, and individual medical entrepreneurs also emigrated and provided services. This paper describes the pattern of medical settlement in the colony's earliest years and relates this to the health of the population and the development of medical and hospital services.

New Zealand Teachers Respond to the "National Writing Project" Experience

ERIC Educational Resources Information Center

Locke, Terry; Whitehead, David; Dix, Stephanie; Cawkwell, Gail

2011-01-01

This article draws on early data from a two-year project (2009-11) being undertaken in the New Zealand context by the authors entitled: "Teachers as Writers: Transforming Professional Identity and Classroom Practice". Based on the National Writing Project in the USA (and in New Zealand in the 1980s) its hypothesis is that when teachers…

Reporting of suicide by the New Zealand media.

PubMed

Thom, Katey; McKenna, Brian; Edwards, Gareth; O'Brien, Anthony; Nakarada-Kordic, Ivana

2012-01-01

Rates of suicide in New Zealand are high compared with those of other countries. International evidence suggests that the reporting of suicide may influence rates of suicidal behavior. No research exists, however, on the reporting of suicide by New Zealand media. This study provides the first baseline picture of the reporting of suicide by New Zealand media. The overall objective was to use the findings to inform future development of media guidelines by the Ministry of Health. Newspaper, Internet, television and radio news items on suicide were collected over 12 months. Descriptive statistical data on the nature and extent of the reporting of suicide were generated through content analysis of applicable items. A random sample of 10% was then subjected to a quality analysis to determine whether items aligned with the Ministry of Health's guideline for the reporting of suicide. A total of 3,483 items were extracted, most of which reported on an individual's attempted or completed suicide, while suicide methods were not often mentioned. Few items focused on people overcoming their difficulties or provided information to assist people struggling with suicidal ideation. The reporting of suicide by New Zealand media was extensive and generally of good quality. Better collaboration between the media and mental health professionals is needed, however, to increase information supplied within items on support services. More succinct guidelines and increased journalist awareness of their existence would also contribute to the quality of reporting on suicide.

Solar Wind drivers affecting GIC magnitude in New Zealand.

NASA Astrophysics Data System (ADS)

Mac Manus, D. H.; Rodger, C. J.; Dalzell, M.; Petersen, T.; Clilverd, M. A.

2017-12-01

Interplanetary shocks arriving at the Earth drive magnetosphere and ionosphere current systems. Ground based magnetometers detect the time derivation of the horizontal magnetic field (dBH/dt) which can indicate the strength of these ionospheric currents. The strong dBH/dt spikes have been observed to cause large Geomagnetically Induced Currents (GIC) in New Zealand. Such could, potentially lead to large scale damage to technological infrastructure such as power network transformers; one transformer was written off in New Zealand after a sudden commencement on 6 November 2001. The strength of the incoming interplanetary shocks are monitored by satellite measurements undertaken at the L1 point. Such measurements could give power network operators a 20-60 minute warning before potentially damaging GIC occurs. In this presentation we examine solar wind measurements from the Advanced Composition Explorer (ACE), Wind, and the Solar and Heliospheric Observatory (SOHO). We contrast those solar wind observations with GIC measured in New Zealand's South Island from 2001 to 2016. We are searching for a consistent relationship between the incoming interplanetary shock and the GIC magnitude. Such a relationship would allow Transpower New Zealand Limited a small time window to implement mitigation plans in order to restrict any GIC-caused damage.

The New Zealand Indices of Multiple Deprivation (IMD): A new suite of indicators for social and health research in Aotearoa, New Zealand

PubMed Central

2017-01-01

For the past 20 years, the New Zealand Deprivation Index (NZDep) has been the universal measure of area-based social circumstances for New Zealand (NZ) and often the key social determinant used in population health and social research. This paper presents the first theoretical and methodological shift in the measurement of area deprivation in New Zealand since the 1990s and describes the development of the New Zealand Index of Multiple Deprivation (IMD). We briefly describe the development of Data Zones, an intermediary geographical scale, before outlining the development of the New Zealand Index of Multiple Deprivation (IMD), which uses routine datasets and methods comparable to current international deprivation indices. We identified 28 indicators of deprivation from national health, social development, taxation, education, police databases, geospatial data providers and the 2013 Census, all of which represented seven Domains of deprivation: Employment; Income; Crime; Housing; Health; Education; and Geographical Access. The IMD is the combination of these seven Domains. The Domains may be used individually or in combination, to explore the geography of deprivation and its association with a given health or social outcome. Geographic variations in the distribution of the IMD and its Domains were found among the District Health Boards in NZ, suggesting that factors underpinning overall deprivation are inconsistent across the country. With the exception of the Access Domain, the IMD and its Domains were statistically and moderately-to-strongly associated with both smoking rates and household poverty. The IMD provides a more nuanced view of area deprivation circumstances in Aotearoa NZ. Our vision is for the IMD and the Data Zones to be widely used to inform research, policy and resource allocation projects, providing a better measurement of area deprivation in NZ, improved outcomes for Māori, and a more consistent approach to reporting and monitoring the social

The New Zealand Indices of Multiple Deprivation (IMD): A new suite of indicators for social and health research in Aotearoa, New Zealand.

PubMed

Exeter, Daniel John; Zhao, Jinfeng; Crengle, Sue; Lee, Arier; Browne, Michael

2017-01-01

For the past 20 years, the New Zealand Deprivation Index (NZDep) has been the universal measure of area-based social circumstances for New Zealand (NZ) and often the key social determinant used in population health and social research. This paper presents the first theoretical and methodological shift in the measurement of area deprivation in New Zealand since the 1990s and describes the development of the New Zealand Index of Multiple Deprivation (IMD). We briefly describe the development of Data Zones, an intermediary geographical scale, before outlining the development of the New Zealand Index of Multiple Deprivation (IMD), which uses routine datasets and methods comparable to current international deprivation indices. We identified 28 indicators of deprivation from national health, social development, taxation, education, police databases, geospatial data providers and the 2013 Census, all of which represented seven Domains of deprivation: Employment; Income; Crime; Housing; Health; Education; and Geographical Access. The IMD is the combination of these seven Domains. The Domains may be used individually or in combination, to explore the geography of deprivation and its association with a given health or social outcome. Geographic variations in the distribution of the IMD and its Domains were found among the District Health Boards in NZ, suggesting that factors underpinning overall deprivation are inconsistent across the country. With the exception of the Access Domain, the IMD and its Domains were statistically and moderately-to-strongly associated with both smoking rates and household poverty. The IMD provides a more nuanced view of area deprivation circumstances in Aotearoa NZ. Our vision is for the IMD and the Data Zones to be widely used to inform research, policy and resource allocation projects, providing a better measurement of area deprivation in NZ, improved outcomes for Māori, and a more consistent approach to reporting and monitoring the social

Stereo Pair: Wellington, New Zealand

NASA Image and Video Library

2000-05-11

Wellington, the capital city of New Zealand, is located on the shores of Port Nicholson, a natural harbor at the south end of North Island. The city was founded in 1840 by British emigrants and now has a regional population of more than 400,000 residents.

The United Kingdom Primary Immune Deficiency (UKPID) registry 2012 to 2017.

PubMed

Shillitoe, B; Bangs, C; Guzman, D; Gennery, A R; Longhurst, H J; Slatter, M; Edgar, D M; Thomas, M; Worth, A; Huissoon, A; Arkwright, P D; Jolles, S; Bourne, H; Alachkar, H; Savic, S; Kumararatne, D S; Patel, S; Baxendale, H; Noorani, S; Yong, P F K; Waruiru, C; Pavaladurai, V; Kelleher, P; Herriot, R; Bernatonienne, J; Bhole, M; Steele, C; Hayman, G; Richter, A; Gompels, M; Chopra, C; Garcez, T; Buckland, M

2018-06-01

This is the second report of the United Kingdom Primary Immunodeficiency (UKPID) registry. The registry will be a decade old in 2018 and, as of August 2017, had recruited 4758 patients encompassing 97% of immunology centres within the United Kingdom. This represents a doubling of recruitment into the registry since we reported on 2229 patients included in our first report of 2013. Minimum PID prevalence in the United Kingdom is currently 5·90/100 000 and an average incidence of PID between 1980 and 2000 of 7·6 cases per 100 000 UK live births. Data are presented on the frequency of diseases recorded, disease prevalence, diagnostic delay and treatment modality, including haematopoietic stem cell transplantation (HSCT) and gene therapy. The registry provides valuable information to clinicians, researchers, service commissioners and industry alike on PID within the United Kingdom, which may not otherwise be available without the existence of a well-established registry. © 2018 British Society for Immunology.

Development of a Web-Based Nationwide Korean Pediatric Dental Sedation Registry.

PubMed

Choi, Sung Chul; Yang, Yeonmi; Yoo, Seunghoon; Kim, Jiyeon; Jeong, Taesung; Shin, Teo Jeon

Finding a balance between sedation efficacy and safety remains an ongoing challenge. In children, the risk of sedation-related complications is relatively high. It is of utmost importance to determine the factors related to improved overall sedation outcomes. However, most previous reports have been based on small samples at single institutions. The Korean Academy of Pediatric Dentistry (KAPD) developed a Korean Pediatric Dental Sedation Registry using a web-based platform. Specialists in pediatric dental sedation selected the itemized list included within the registry through an extensive literature review. The web-based registry was built into the KAPD homepage to facilitate easy access to the sedation data. All teaching and university hospitals agreed to participate in the Korean Pediatric Dental Sedation Registry. This is the first attempt to collect sedation data on a nationwide scale in the field of pediatric dentistry. The sedation database established with the registry may facilitate standardizing and improving pediatric dental sedation clinical practices.

Childhood Vesicoureteral Reflux Studies: Registries and Repositories Sources and Nosology

PubMed Central

Chesney, Russell W.; Patters, Andrea B.

2012-01-01

Despite several recent studies, the advisability of antimicrobial prophylaxis and certain imaging studies for urinary tract infections (UTIs) remains controversial. The role of vesicoureteral reflux (VUR) on the severity and re-infection rates for UTIs is also difficult to assess. Registries and repositories of data and biomaterials from clinical studies in children with VUR are valuable. Disease registries are collections of secondary data related to patients with a specific diagnosis, condition or procedure. Registries differ from indices in that they contain more extensive data. A research repository is an entity that receives, stores, processes and/or disseminates specimens (or other materials) as needed. It encompasses the physical location as well as the full range of activities associated with its operation. It may also be referred to as a biorepository. This report provides information about some current registries and repositories that include data and samples from children with VUR. It also describes the heterogeneous nature of the subjects, as some registries and repositories include only data or samples from patients with primary reflux while others also include those from patients with syndromic or secondary reflux. PMID:23044377

Childhood vesicoureteral reflux studies: registries and repositories sources and nosology.

PubMed

Chesney, Russell W; Patters, Andrea B

2013-12-01

Despite several recent studies, the advisability of antimicrobial prophylaxis and certain imaging studies for urinary tract infections (UTIs) remains controversial. The role of vesicoureteral reflux (VUR) on the severity and re-infection rates for UTIs is also difficult to assess. Registries and repositories of data and biomaterials from clinical studies in children with VUR are valuable. Disease registries are collections of secondary data related to patients with a specific diagnosis, condition or procedure. Registries differ from indices in that they contain more extensive data. A research repository is an entity that receives, stores, processes and/or disseminates specimens (or other materials) as needed. It encompasses the physical location as well as the full range of activities associated with its operation. It may also be referred to as a biorepository. This report provides information about some current registries and repositories that include data and samples from children with VUR. It also describes the heterogeneous nature of the subjects, as some registries and repositories include only data or samples from patients with primary reflux while others also include those from patients with syndromic or secondary reflux. Copyright © 2012 Journal of Pediatric Urology Company. All rights reserved.

CIRSE Vascular Closure Device Registry

DOE Office of Scientific and Technical Information (OSTI.GOV)

Reekers, Jim A., E-mail: j.a.reekers@amc.uva.nl; Mueller-Huelsbeck, Stefan; Libicher, Martin

2011-02-15

Purpose: Vascular closure devices are routinely used after many vascular interventional radiology procedures. However, there have been no major multicenter studies to assess the safety and effectiveness of the routine use of closure devices in interventional radiology. Methods: The CIRSE registry of closure devices with an anchor and a plug started in January 2009 and ended in August 2009. A total of 1,107 patients were included in the registry. Results: Deployment success was 97.2%. Deployment failure specified to access type was 8.8% [95% confidence interval (95% CI) 5.0-14.5] for antegrade access and 1.8% (95% CI 1.1-2.9) for retrograde access (Pmore » = 0.001). There was no difference in deployment failure related to local PVD at the access site. Calcification was a reason for deployment failure in only <0.5% of patients. Postdeployment bleeding occurred in 6.4%, and most these (51.5%) could be managed with light manual compression. During follow-up, other device-related complications were reported in 1.3%: seven false aneurysms, three hematoma >5.9 cm, and two vessel occlusions. Conclusion: The conclusion of this registry of closure devices with an anchor and a plug is that the use of this device in interventional radiology procedures is safe, with a low incidence of serious access site complications. There seems to be no difference in complications between antegrade and retrograde access and other parameters.« less

CIRSE Vascular Closure Device Registry

PubMed Central

Müller-Hülsbeck, Stefan; Libicher, Martin; Atar, Eli; Trentmann, Jens; Goffette, Pierre; Borggrefe, Jan; Zeleňák, Kamil; Hooijboer, Pieter; Belli, Anna-Maria

2010-01-01

Purpose Vascular closure devices are routinely used after many vascular interventional radiology procedures. However, there have been no major multicenter studies to assess the safety and effectiveness of the routine use of closure devices in interventional radiology. Methods The CIRSE registry of closure devices with an anchor and a plug started in January 2009 and ended in August 2009. A total of 1,107 patients were included in the registry. Results Deployment success was 97.2%. Deployment failure specified to access type was 8.8% [95% confidence interval (95% CI) 5.0–14.5] for antegrade access and 1.8% (95% CI 1.1–2.9) for retrograde access (P = 0.001). There was no difference in deployment failure related to local PVD at the access site. Calcification was a reason for deployment failure in only <0.5% of patients. Postdeployment bleeding occurred in 6.4%, and most these (51.5%) could be managed with light manual compression. During follow-up, other device-related complications were reported in 1.3%: seven false aneurysms, three hematoma >5.9 cm, and two vessel occlusions. Conclusion The conclusion of this registry of closure devices with an anchor and a plug is that the use of this device in interventional radiology procedures is safe, with a low incidence of serious access site complications. There seems to be no difference in complications between antegrade and retrograde access and other parameters. PMID:20981425

Cardiac arrest risk standardization using administrative data compared to registry data

PubMed Central

Gaieski, David F.; Donnino, Michael W.; Nelson, Joshua I. M.; Mutter, Eric L.; Carr, Brendan G.; Abella, Benjamin S.; Wiebe, Douglas J.

2017-01-01

Background Methods for comparing hospitals regarding cardiac arrest (CA) outcomes, vital for improving resuscitation performance, rely on data collected by cardiac arrest registries. However, most CA patients are treated at hospitals that do not participate in such registries. This study aimed to determine whether CA risk standardization modeling based on administrative data could perform as well as that based on registry data. Methods and results Two risk standardization logistic regression models were developed using 2453 patients treated from 2000–2015 at three hospitals in an academic health system. Registry and administrative data were accessed for all patients. The outcome was death at hospital discharge. The registry model was considered the “gold standard” with which to compare the administrative model, using metrics including comparing areas under the curve, calibration curves, and Bland-Altman plots. The administrative risk standardization model had a c-statistic of 0.891 (95% CI: 0.876–0.905) compared to a registry c-statistic of 0.907 (95% CI: 0.895–0.919). When limited to only non-modifiable factors, the administrative model had a c-statistic of 0.818 (95% CI: 0.799–0.838) compared to a registry c-statistic of 0.810 (95% CI: 0.788–0.831). All models were well-calibrated. There was no significant difference between c-statistics of the models, providing evidence that valid risk standardization can be performed using administrative data. Conclusions Risk standardization using administrative data performs comparably to standardization using registry data. This methodology represents a new tool that can enable opportunities to compare hospital performance in specific hospital systems or across the entire US in terms of survival after CA. PMID:28783754

Food safety regulations in Australia and New Zealand Food Standards.

PubMed

Ghosh, Dilip

2014-08-01

Citizens of Australia and New Zealand recognise that food security is a major global issue. Food security also affects Australia and New Zealand's status as premier food exporting nations and the health and wellbeing of the Australasian population. Australia is uniquely positioned to help build a resilient food value chain and support programs aimed at addressing existing and emerging food security challenges. The Australian food governance system is fragmented and less transparent, being largely in the hands of government and semi-governmental regulatory authorities. The high level of consumer trust in Australian food governance suggests that this may be habitual and taken for granted, arising from a lack of negative experiences of food safety. In New Zealand the Ministry of Primary Industries regulates food safety issues. To improve trade and food safety, New Zealand and Australia work together through Food Standards Australia New Zealand (FSANZ) and other co-operative agreements. Although the potential risks to the food supply are dynamic and constantly changing, the demand, requirement and supply for providing safe food remains firm. The Australasian food industry will need to continually develop its system that supports the food safety program with the help of scientific investigations that underpin the assurance of what is and is not safe. The incorporation of a comprehensive and validated food safety program is one of the total quality management systems that will ensure that all areas of potential problems are being addressed by industry. © 2014 Society of Chemical Industry.

Core outcome sets and trial registries.

PubMed

Clarke, Mike; Williamson, Paula

2015-05-14

Some reasons for registering trials might be considered as self-serving, such as satisfying the requirements of a journal in which the researchers wish to publish their eventual findings or publicising the trial to boost recruitment. Registry entries also help others, including systematic reviewers, to know about ongoing or unpublished studies and contribute to reducing research waste by making it clear what studies are ongoing. Other sources of research waste include inconsistency in outcome measurement across trials in the same area, missing data on important outcomes from some trials, and selective reporting of outcomes. One way to reduce this waste is through the use of core outcome sets: standardised sets of outcomes for research in specific areas of health and social care. These do not restrict the outcomes that will be measured, but provide the minimum to include if a trial is to be of the most use to potential users. We propose that trial registries, such as ISRCTN, encourage researchers to note their use of a core outcome set in their entry. This will help people searching for trials and those worried about selective reporting in closed trials. Trial registries can facilitate these efforts to make new trials as useful as possible and reduce waste. The outcomes section in the entry could prompt the researcher to consider using a core outcome set and facilitate the specification of that core outcome set and its component outcomes through linking to the original core outcome set. In doing this, registries will contribute to the global effort to ensure that trials answer important uncertainties, can be brought together in systematic reviews, and better serve their ultimate aim of improving health and well-being through improving health and social care.

Junior Officer Leadership Development in the New Zealand Army

DTIC Science & Technology

2017-06-09

officers within the New Zealand Army and United States Army were gathered using a survey , to gain their perspective and identify any key areas for...senior officers within the New Zealand Army and United States Army were gathered using a survey , to gain their perspective and identify any key areas...time to take part in my survey , and contribute their wisdom and experience. The support and guidance that I received from other international

Sodium in commonly consumed fast foods in New Zealand: a public health opportunity.

PubMed

Prentice, Celia A; Smith, Claire; McLean, Rachael M

2016-04-01

(i) To determine the Na content of commonly consumed fast foods in New Zealand and (ii) to estimate Na intake from savoury fast foods for the New Zealand adult population. Commonly consumed fast foods were identified from the 2008/09 New Zealand Adult Nutrition Survey. Na values from all savoury fast foods from chain restaurants (n 471) were obtained from nutrition information on company websites, while the twelve most popular fast-food types from independent outlets (n 52) were determined using laboratory analysis. Results were compared with the UK Food Standards Agency 2012 sodium targets. Nutrient analysis was completed to estimate Na intake from savoury fast foods for the New Zealand population using the 2008/09 New Zealand Adult Nutrition Survey. New Zealand. Adults aged 15 years and above. From chain restaurants, sauces/salad dressings and fried chicken had the highest Na content (per 100 g) and from independent outlets, sausage rolls, battered hotdogs and mince and cheese pies were highest in Na (per 100 g). The majority of fast foods exceeded the UK Food Standards Agency 2012 sodium targets. The mean daily Na intake from savoury fast foods was 283 mg/d for the total adult population and 1229 mg/d for fast-food consumers. Taking into account the Na content and frequency of consumption, potato dishes, filled rolls, hamburgers and battered fish contributed substantially to Na intake for fast-food consumers in New Zealand. These foods should be targeted for Na reduction reformulation.

Assessing race and ethnicity data quality across cancer registries and EMRs in two hospitals.

PubMed

Lee, Simon J Craddock; Grobe, James E; Tiro, Jasmin A

2016-05-01

Measurement of patient race/ethnicity in electronic health records is mandated and important for tracking health disparities. Characterize the quality of race/ethnicity data collection efforts. For all cancer patients diagnosed (2007-2010) at two hospitals, we extracted demographic data from five sources: 1) a university hospital cancer registry, 2) a university electronic medical record (EMR), 3) a community hospital cancer registry, 4) a community EMR, and 5) a joint clinical research registry. The patients whose data we examined (N = 17 834) contributed 41 025 entries (range: 2-5 per patient across sources), and the source comparisons generated 1-10 unique pairs per patient. We used generalized estimating equations, chi-squares tests, and kappas estimates to assess data availability and agreement. Compared to sex and insurance status, race/ethnicity information was significantly less likely to be available (χ(2 )> 8043, P < .001), with variation across sources (χ(2 )> 10 589, P < .001). The university EMR had a high prevalence of "Unknown" values. Aggregate kappa estimates across the sources was 0.45 (95% confidence interval, 0.45-0.45; N = 31 276 unique pairs), but improved in sensitivity analyses that excluded the university EMR source (κ = 0.89). Race/ethnicity data were in complete agreement for only 6988 patients (39.2%). Pairs with a "Black" data value in one of the sources had the highest agreement (95.3%), whereas pairs with an "Other" value exhibited the lowest agreement across sources (11.1%). Our findings suggest that high-quality race/ethnicity data are attainable. Many of the "errors" in race/ethnicity data are caused by missing or "Unknown" data values. To facilitate transparent reporting of healthcare delivery outcomes by race/ethnicity, healthcare systems need to monitor and enforce race/ethnicity data collection standards. © The Author 2015. Published by Oxford University Press on behalf of the American

BioShaDock: a community driven bioinformatics shared Docker-based tools registry.

PubMed

Moreews, François; Sallou, Olivier; Ménager, Hervé; Le Bras, Yvan; Monjeaud, Cyril; Blanchet, Christophe; Collin, Olivier

2015-01-01

Linux container technologies, as represented by Docker, provide an alternative to complex and time-consuming installation processes needed for scientific software. The ease of deployment and the process isolation they enable, as well as the reproducibility they permit across environments and versions, are among the qualities that make them interesting candidates for the construction of bioinformatic infrastructures, at any scale from single workstations to high throughput computing architectures. The Docker Hub is a public registry which can be used to distribute bioinformatic software as Docker images. However, its lack of curation and its genericity make it difficult for a bioinformatics user to find the most appropriate images needed. BioShaDock is a bioinformatics-focused Docker registry, which provides a local and fully controlled environment to build and publish bioinformatic software as portable Docker images. It provides a number of improvements over the base Docker registry on authentication and permissions management, that enable its integration in existing bioinformatic infrastructures such as computing platforms. The metadata associated with the registered images are domain-centric, including for instance concepts defined in the EDAM ontology, a shared and structured vocabulary of commonly used terms in bioinformatics. The registry also includes user defined tags to facilitate its discovery, as well as a link to the tool description in the ELIXIR registry if it already exists. If it does not, the BioShaDock registry will synchronize with the registry to create a new description in the Elixir registry, based on the BioShaDock entry metadata. This link will help users get more information on the tool such as its EDAM operations, input and output types. This allows integration with the ELIXIR Tools and Data Services Registry, thus providing the appropriate visibility of such images to the bioinformatics community.

BioShaDock: a community driven bioinformatics shared Docker-based tools registry

PubMed Central

Moreews, François; Sallou, Olivier; Ménager, Hervé; Le bras, Yvan; Monjeaud, Cyril; Blanchet, Christophe; Collin, Olivier

2015-01-01

Linux container technologies, as represented by Docker, provide an alternative to complex and time-consuming installation processes needed for scientific software. The ease of deployment and the process isolation they enable, as well as the reproducibility they permit across environments and versions, are among the qualities that make them interesting candidates for the construction of bioinformatic infrastructures, at any scale from single workstations to high throughput computing architectures. The Docker Hub is a public registry which can be used to distribute bioinformatic software as Docker images. However, its lack of curation and its genericity make it difficult for a bioinformatics user to find the most appropriate images needed. BioShaDock is a bioinformatics-focused Docker registry, which provides a local and fully controlled environment to build and publish bioinformatic software as portable Docker images. It provides a number of improvements over the base Docker registry on authentication and permissions management, that enable its integration in existing bioinformatic infrastructures such as computing platforms. The metadata associated with the registered images are domain-centric, including for instance concepts defined in the EDAM ontology, a shared and structured vocabulary of commonly used terms in bioinformatics. The registry also includes user defined tags to facilitate its discovery, as well as a link to the tool description in the ELIXIR registry if it already exists. If it does not, the BioShaDock registry will synchronize with the registry to create a new description in the Elixir registry, based on the BioShaDock entry metadata. This link will help users get more information on the tool such as its EDAM operations, input and output types. This allows integration with the ELIXIR Tools and Data Services Registry, thus providing the appropriate visibility of such images to the bioinformatics community. PMID:26913191

The Cystic Fibrosis Foundation Patient Registry. Design and Methods of a National Observational Disease Registry.

PubMed

Knapp, Emily A; Fink, Aliza K; Goss, Christopher H; Sewall, Ase; Ostrenga, Josh; Dowd, Christopher; Elbert, Alexander; Petren, Kristofer M; Marshall, Bruce C

2016-07-01

The Cystic Fibrosis Foundation Patient Registry (CFFPR) is an ongoing patient registry study that collects longitudinal demographic, clinical, and treatment information about persons with cystic fibrosis (CF) in the United States. CF is a life-shortening genetic disorder that occurs in approximately 1 in 3,500 births in the United States. High-quality observational data is important for clinical research, quality improvement, and clinical management. To describe the data collection, patient population, and key limitations of the CFFPR. Inclusion criteria for the CFFPR include diagnosis with CF or a CFTR-associated disorder, care at an accredited care center program, and provision of informed consent. Data from clinic visits and hospitalizations are collected through a secure website. Loss to follow-up and generalizability were examined using several methods. The accuracy of CFFPR data was evaluated with an audit of 2012 CFFPR data compared to the medical record. Since 1986, the CFFPR contains the records of 48,463 individuals with CF. Participation among individuals seen at accredited care centers is high, and loss to follow-up is low. An audit of 2012 CFFPR data suggests that the CFFPR contains 95% of clinic visits and 90% of hospitalizations found in the medical record for these patients, and nearly all of the audited fields were highly accurate. Registries such as the CFFPR are important tools for research, clinical care, and tracking incidence, mortality and population trends.

Inferior or double joint spaces injection versus superior joint space injection for temporomandibular disorders: a systematic review and meta-analysis.

PubMed

Li, Chunjie; Zhang, Yifan; Lv, Jun; Shi, Zongdao

2012-01-01

To compare the effect and safety of inferior or double temporomandibular joint spaces drug injection versus superior temporomandibular joint space injection in the treatment of temporomandibular disorders. MEDLINE (via Ovid, 1948 to March 2011), CENTRAL (Issue 1, 2011), Embase (1984 to March 2011), CBM (1978 to March 2011), and World Health Organization International Clinical Trials Registry Platform were searched electronically; relevant journals as well as references of included studies were hand-searched for randomized controlled trials comparing effect or safety of inferior or double joint spaces drug injection technique with those of superior space injection technique. Risk of bias assessment with the tool recommended by Cochrane Collaboration, reporting quality assessment with CONSORT and data extraction, were carried out independently by 2 reviewers. Meta-analysis was delivered with RevMan 5.0.23. Four trials with 349 participants were included. All the included studies had moderate risk of bias. Meta-analysis showed that inferior or double spaces injection technique could significantly increase 2.88 mm more maximal mouth opening (P = .0001) and alleviate pain intensity in the temporomandibular area on average by 9.01 mm visual analog scale scores (P = .0001) compared with superior space injection technique, but could not markedly change synthesized clinical index (P = .05) in the short term; nevertheless, they showed more beneficial maximal mouth opening (P = .002), pain relief (P < .0001), and synthesized clinical variable (P < .0001) in the long term than superior space injection. No serious adverse events were reported. Inferior or double temporomandibular joint spaces drug injection technique shows better effect than superior space injection technique, and their safety is affirmative. However, more high-quality studies are still needed to test and verify the evidence. Crown Copyright © 2012. Published by Elsevier Inc. All rights reserved.

Anaglyph, Landsat Overlay: Wellington, New Zealand

NASA Image and Video Library

2000-05-11

This anaglyph, from NASA Shuttle Radar Topography Mission, is of Wellington, the capital city of New Zealand, located on the shores of Port Nicholson, a natural harbor. 3D glasses are necessary to view this image.

An innovative and collaborative partnership between patients with rare disease and industry-supported registries: the Global aHUS Registry.

PubMed

Woodward, Len; Johnson, Sally; Walle, Johan Vande; Beck, Joran; Gasteyger, Christoph; Licht, Christoph; Ariceta, Gema

2016-11-21

Patients are becoming increasingly involved in research which can promote innovation through novel ideas, support patient-centred actions, and facilitate drug development. For rare diseases, registries that collect data from patients can increase knowledge of the disease's natural history, evaluate clinical therapies, monitor drug safety, and measure quality of care. The active participation of patients is expected to optimise rare-disease management and improve patient outcomes. However, few reports address the type and frequency of interactions involving patients, and what research input patient groups have. Here, we describe a collaboration between an international group of patient organisations advocating for patients with atypical haemolytic uraemic syndrome (aHUS), the aHUS Alliance, and an international aHUS patient registry (ClinicalTrials.gov NCT01522183). The aHUS Registry Scientific Advisory Board (SAB) invited the aHUS Alliance to submit research ideas important to patients with aHUS. This resulted in 24 research suggestions from patients and patient organisations being presented to the SAB. The proposals were classified under seven categories, the most popular of which were understanding factors that cause disease manifestations and learning more about the clinical and psychological/social impact of living with the disease. Subsequently, aHUS Alliance members voted for up to five research priorities. The top priority was: "What are the outcomes of a transplant without eculizumab and what non-kidney damage is likely in patients with aHUS?". This led directly to the initiation of an ongoing analysis of the data collected in the Registry on patients with kidney transplants. This collaboration resulted in several topics proposed by the aHUS Alliance being selected as priority activities for the aHUS Registry, with one new analysis already underway. A clear pathway was established for engagement between a patient advocacy group and an international research

Towards a Pre-Service Technology Teacher Education Resource for New Zealand

ERIC Educational Resources Information Center

Forret, Michael; Fox-Turnbull, Wendy; Granshaw, Bruce; Harwood, Cliff; Miller, Angela; O'Sullivan, Gary; Patterson, Moira

2013-01-01

The Pre-service Technology Teacher Education Resource (PTTER) was developed as a cross-institutional resource to support the development of initial technology teacher education programmes in New Zealand. The PTTER was developed through collaboration involving representatives from each of the six New Zealand university teacher education providers,…

16th IHIW: Global analysis of registry HLA haplotypes from 20 Million individuals: Report from the IHIW Registry Diversity Group

PubMed Central

Maiers, M; Gragert, L; Madbouly, A; Steiner, D; Marsh, S G E; Gourraud, P-A; Oudshoorn, M; Zanden, H; Schmidt, A H; Pingel, J; Hofmann, J; Müller, C; Eberhard, H-P

2013-01-01

This project has the goal to validate bioinformatics methods and tools for HLA haplotype frequency analysis specifically addressing unique issues of haematopoietic stem cell registry data sets. In addition to generating new methods and tools for the analysis of registry data sets, the intent is to produce a comprehensive analysis of HLA data from 20 million donors from the Bone Marrow Donors Worldwide (BMDW) database. This report summarizes the activity on this project as of the 16IHIW meeting in Liverpool. PMID:23280139

Economic evaluation of Mumbai and its satellite cancer registries: Implications for expansion of data collection☆

PubMed Central

Koyande, Shravani; Subramanian, Sujha; Edwards, Patrick; Hoover, Sonja; Deshmane, Vinay; Tankga, Florence; Dikshit, Rajesh; Saraiya, Mona

2018-01-01

Background The Mumbai Cancer Registry is a population-based cancer registry that has been in operation for more than five decades and has successfully initiated and integrated three satellite registries in Pune, Nagpur, and Aurangabad, each covering specific urban populations of the Indian state Maharashtra. Data collectors at the satellites perform data abstraction, but Mumbai carries out all other core registration activities such as data analysis and quality assurance. Each of the three satellite registries follows the same data collection methodology as the main Mumbai Cancer Registry. This study examines the cost of operating the Mumbai and its satellite cancer registries. Methods We modified and used the Centers for Disease Control and Prevention’s (CDC’s) International Registry Costing Tool (IntRegCosting Tool) to collect cost and resource use data for the Mumbai Cancer Registry and three satellites. Results Almost 60% of the registration expenditure was borne by the Indian Cancer Society, which hosts the Mumbai Cancer Registry, and more than half of the registry expenditure was related to data collection activities. Across the combined registries, 93% of the expenditure was spent on labor. Overall, registration activities had a low cost per case of 226.10 Indian rupees (or a little less than 4.00 US dollars in 2014 [used average exchange rate in 2014: 1 US $ = 60 Indian rupees]). Conclusion The centralization of fixed-cost activities in Mumbai likely resulted in economies of scale in operating the Mumbai and satellite registries, which, together, report on almost 20,000 cancer cases annually. In middle-income countries like India, where financial resources are limited, the operational framework provided by the Mumbai and satellite registries can serve as a model for other registries looking to expand data collection. PMID:27726981

Economic evaluation of Mumbai and its satellite cancer registries: Implications for expansion of data collection.

PubMed

Koyande, Shravani; Subramanian, Sujha; Edwards, Patrick; Hoover, Sonja; Deshmane, Vinay; Tankga, Florence; Dikshit, Rajesh; Saraiya, Mona

2016-12-01

The Mumbai Cancer Registry is a population-based cancer registry that has been in operation for more than five decades and has successfully initiated and integrated three satellite registries in Pune, Nagpur, and Aurangabad, each covering specific urban populations of the Indian state Maharashtra. Data collectors at the satellites perform data abstraction, but Mumbai carries out all other core registration activities such as data analysis and quality assurance. Each of the three satellite registries follows the same data collection methodology as the main Mumbai Cancer Registry. This study examines the cost of operating the Mumbai and its satellite cancer registries. We modified and used the Centers for Disease Control and Prevention's (CDC's) International Registry Costing Tool (IntRegCosting Tool) to collect cost and resource use data for the Mumbai Cancer Registry and three satellites. Almost 60% of the registration expenditure was borne by the Indian Cancer Society, which hosts the Mumbai Cancer Registry, and more than half of the registry expenditure was related to data collection activities. Across the combined registries, 93% of the expenditure was spent on labor. Overall, registration activities had a low cost per case of 226.10 Indian rupees (or a little less than 4.00 US dollars in 2014 [used average exchange rate in 2014: 1 US $=60 Indian rupees]). The centralization of fixed-cost activities in Mumbai likely resulted in economies of scale in operating the Mumbai and satellite registries, which, together, report on almost 20,000 cancer cases annually. In middle-income countries like India, where financial resources are limited, the operational framework provided by the Mumbai and satellite registries can serve as a model for other registries looking to expand data collection. Copyright © 2016 Elsevier Ltd. All rights reserved.

Cultural safety in New Zealand midwifery practice. Part 2.

PubMed

Farry, Annabel; Crowther, Susan

2014-01-01

Midwives in New Zealand work within a unique cultural context. This calls for an understanding and appreciation of biculturalism and the equal status of Mãori and Europeans as the nation's founding peoples. This paper is the second of two papers that explore the notions of cultural safety and competence. Exploration and discussion take place in the New Zealand context, yet have transferable implications for midwives everywhere. This second paper focuses on midwifery education and practice.

Comparative study on the National Renal Disease Registry in America, England and Iran.

PubMed

Ajami, Sima; Askarianzadeh, Mahdi; Saghaeiannejad-Isfahani, Sakineh; Mortazavi, Mojgan; Ehteshami, Asghar

2014-01-01

A disease registry is a database that includes information about people diagnosed with specific types of diseases. The registry collects information that can be used for capturing, managing, and organizing specific information for patients. The aim of this study was to identify and compare the National Renal Disease Registry (NRDR) in selected countries including the United States, United Kingdom, and Iran. Retrieval of data of the NRDR performed through scholars responsible in related agencies, including the Ministry of Health and Medical Education, and Renal Disease charity, and data registries in the United States, United Kingdom, and Iran. This research was an applied and descriptive, comparative study. The study population consisted of the National Renal Disease Registry of the selected countries including the United States, United Kingdom, and Iran, from which data were collected using forms that were designed according to the study objectives. Sources of data were researchers, scholars responsible in related agencies, including the Ministry of Health and Medical Education, and Renal Disease charity, data registries, articles, books, journals, databases, websites, and related documents. Data were gathered through phone, e-mail, study, observation, and interview. The researchers collected data for each country based on the study objectives and then put them in comparative tables. Data were analyzed by descriptive, comparative, and theoretical methods. There is no NRDR in Iran to report the short- and long-term results of renal disease. Most of the renal transplant teams report their own results as single-center experiences. America and Britain have pre-eminent national registry of renal disease, compared to other countries. The Iranian Society of Nephrology should be actively involved to create a National Renal Registry in Iran. The registry should have representatives from the universities, government, armed forces, and private sectors. Researchers proposed

Mineral composition of lamb carcasses from the United States and New Zealand.

PubMed

Lin, K C; Cross, H R; Johnson, H K; Breidenstein, B C; Randecker, V; Field, R A

1988-01-01

The mineral composition-iron (Fe), zinc (Zn), copper (Cu), calcium (Ca), magnesium (Mg), sodium (Na), potassium (K), fluoride (F), and phosphorus (P) (New Zealand lamb only)-of lean tissue from lamb retail cuts was studied. Twenty-four US lamb carcasses of different ages (5 to 11 months), geographical regions (Texas, Colorado and Montana) and USDA quality grades (Prime and Choice) and 27 New Zealand lamb carcasses from three weight groups (11 to 12·5 kg, 13 to 14·5 kg, and 16·5 to 18 kg), age rangining from 7 to 8 months, were selected for use in this study. Mineral concentrations were influenced more by retail cut and age than by quality grade or weigth group. Foreshank and shoulder cuts from both the US and New Zealand group consistently had the highest (P < 0·05) Zn content among the cuts. The K content of the muscle in US lambs increased as age increased, while the level of Ca and Zn in New Zealand lambs decreased as carcass weight increased. Except for Ca, the mineral concentrations of the lean tissue from US lambs were higher than the New Zealand lambs, although the differences were not always significant. US lambs had approximately 20%, 30% and 37% more Fe, Zn and Mg, respectively, but 27% less Ca than lean tissue from the New Zealand lambs. Copyright © 1989. Published by Elsevier Ltd.

Public Education in New Zealand.

ERIC Educational Resources Information Center

Ministry of Education, Wellington (New Zealand).