Science.gov

Sample records for national disease registries

  1. The Italian National Rare Diseases Registry

    PubMed Central

    Taruscio, Domenica; Kodra, Yllka; Ferrari, Gianluca; Vittozzi, Luciano

    2014-01-01

    Introduction Rare disease registries are a priority at European level and specific actions are being implemented by the European Commission to support their development. In Italy, a National Registry of rare diseases has been established in 2001 as a network of regional registries. The latter have gradually been established and the full coverage of the Italian territory was attained during 2011. Methods Here we describe the basic features of the National Registry of rare diseases; the activities carried out to promote consistent operations in the regional registries; and the overall quality and composition of the records collected. Results After a validation process, including removal of duplicate records, 110,841 records of patients with rare diseases, single and with group denominations, are stored in the National Registry of rare diseases. They correspond to the overall diagnoses communicated to national registry by regional registries up to 30 June 2012. The quality of the data collected by the the National Registry of rare diseases has been assessed with respect to completeness and consistency of procedures. Variables characterising case and diagnosis showed a very limited number of missing values. Records reported at least one case of 485 rare conditions. Discussion To date, the National Registry of rare diseases is a surveillance system with the main objective of producing epidemiologic evidence on rare diseases in Italy, and of supporting policy making and health services planning. Data quality still represents a limitation for any sound epidemiological estimate of rare diseases in Italy. However, improvements of the quality of collected data and the completeness of case notifications should be strengthened. PMID:24922301

  2. Developing a provisional and national renal disease registry for Iran

    PubMed Central

    Ajami, Sima; Askarianzadeh, Mahdi; Mortazavi, Mojgan

    2015-01-01

    Background: Disease registry is a database that includes information about people suffering a special kind of disease. The aim of this study was to first identify and compare the National Renal Disease Registry (NRDR) characteristics in some countries with Iran; and second, develop a provisional and NRDR for Iran. Materials and Methods: Retrieval of data of the NRDR was performed by scholars responsible in related agencies, including the Ministry of Health and Medical Education, Renal Disease charity, and data registries in the United States, United Kingdom, Malaysia, and Iran. This research was applied, and the study was descriptive-comparative. The study population consisted of the NRDR in selected countries in which data were collected by forms that were designed according to the study objectives. Sources of data were researchers, articles, books, journals, databases, websites, related documents, and people who are active in this regard, and related agencies, including the Ministry of Health and Medical Education, and patient support charity. 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. Results: Most of the renal transplant teams report their own results as a single center experiences. America and Britain have a preeminent national registry of renal disease compared to other countries. Conclusion: Given that control, prevention, and treatment of chronic renal diseases incur high expenses and the disease is one of leading mortality factors in Iran and across the world and since national registry system for chronic renal diseases can provide better tools and strategies to manage and evaluate patients’ characteristics as well as risk factors which eventually leads to making better decisions. PMID:26109970

  3. [Romanian national registry for interstitial lung diseases and sarcoidosis (REGIS): rationale and methods].

    PubMed

    Strâmbu, Irina; Ioniţă, Diana; Belaconi, Ionela; Stoia, Irina; Tudorache, Voicu

    2012-01-01

    Interstitial lung diseases (ILD) are a group of extremely heterogeneous conditions (over 200), with low prevalence, but in most cases with severe impact on the quality of life and survival of the patients. The ILD group comprises: idiopathic pulmonary fibrosis, sarcoidosis, hypersensitivity pneumonitis, colagen diseases, vasculitis, eosinophilic pneumonia etc. The prevalence of these diseases is unknown in Romania; the accurate diagnosis needs access to special investigations and expertise with this group of diseases. The authors propose the initiation of a National Registry for Interstitial Lung Diseases and Sarcoidosis (REGIS), based on the lessons learned from other national ILD) registries, which should allow building-up an extended clinical expertise in ILD, evaluating epidemiological data, creating an educational platform for young physicians, better understanding of the outcome and prognosis of these diseases, shaping Romanian Guidelines for the diagnosis and management of ILD, using the data base for clinical research. The registry is started as a pilot in two Romanian centres: "Marius Nasta" Institute of Pneumology in Bucharest and Pneumology Clinic, "Victor Babey" Infectious Diseases Hospital Timişoara. After refining the inclusion criteria for the data base, editing guidelines for ILD diagnosis and launching the registry website, other Romanian centres with interest in ILD will also be able to feed information. PMID:22545484

  4. 75 FR 16488 - National Center for Environmental Health/Agency for Toxic Substances and Disease Registry (NCEH...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-04-01

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND HUMAN SERVICES Centers for Disease Control and Prevention National Center for Environmental Health/Agency for Toxic Substances and Disease Registry (NCEH/ATSDR); Notice of National Conversation on Public Health and Chemical Exposures Leadership...

  5. 75 FR 41505 - National Center for Environmental Health/Agency for Toxic Substances and Disease Registry (NCEH...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-07-16

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND HUMAN SERVICES Centers for Disease Control and Prevention National Center for Environmental Health/Agency for Toxic Substances and Disease Registry (NCEH/ATSDR) ATSDR-263; Notice of National Conversation on Public Health and Chemical...

  6. 75 FR 75474 - National Center for Environmental Health/Agency for Toxic Substances and Disease Registry (NCEH...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-12-03

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND HUMAN SERVICES Centers for Disease Control and Prevention National Center for Environmental Health/Agency for Toxic Substances and Disease Registry (NCEH/ATSDR); Notice of National Conversation on Public Health and Chemical Exposures Leadership...

  7. 75 FR 59727 - National Center for Environmental Health/Agency for Toxic Substances and Disease Registry (NCEH...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-09-28

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND HUMAN SERVICES Centers for Disease Control and Prevention National Center for Environmental Health/Agency for Toxic Substances and Disease Registry (NCEH/ATSDR); Notice of National Conversation on Public Health and Chemical Exposures Leadership...

  8. Reported Numbers of Patients with Rare Diseases Based on Ten-Year Longitudinal National Disability Registries in Taiwan

    ERIC Educational Resources Information Center

    Lin, Jin-Ding; Lin, Lan-Ping; Hung, Wen-Jiu

    2013-01-01

    This paper aims to describe a general demographic picture of patients with rare diseases in Taiwan and particularly focuses on the prevalence of rare diseases over time, age and gender distributions. We analyzed data mainly from the national disability registry from 2002 to 2011 in Taiwan, Republic of China. The results showed that the number of…

  9. Acute coronary syndrome (ACS) registry--leading the charge for National Cardiovascular Disease (NCVD) Database.

    PubMed

    Chin, S P; Jeyaindran, S; Azhari, R; Wan Azman, W A; Omar, I; Robaayah, Z; Sim, K H

    2008-09-01

    Coronary artery disease is one of the most rampant non-communicable diseases in the world. It begins indolently as a fatty streak in the lining of the artery that soon progresses to narrow the coronary arteries and impair myocardial perfusion. Often the atherosclerotic plaque ruptures and causes sudden thrombotic occlusion and acute ST-elevation myocardial infarction (STEMI), non-ST-elevation MI (NSTEMI) or unstable angina (UA). This phenomenon is called acute coronary syndrome (ACS) and is the leading cause of death not only in Malaysia but also globally. In order for us to tackle this threat to the health of our nation we must arm ourselves with reliable and accurate information to assess current burden of disease resources available and success of current strategies. The acute coronary syndrome (ACS) registry is the flagship of the National Cardiovascular Disease Database (NCVD) and is the result of the dedicated and untiring efforts of doctors and nurses in both public and private medical institutions and hospitals around the country, ably guided and supported by the National Heart Association, the National Heart Foundation, the Clinical Research Centre and the Ministry of Health of Malaysia. Analyses of data collected throughout 2006 from 3422 patients with ACS admitted to the 12 tertiary cardiac centres and general hospitals spanning nine states in Malaysia in this first report has already revealed surprising results. Mean age of patients was 59 years while the most consistent risk factor for STEMI was active smoking. Utilization of medications was high generally. Thirty-day mortality for STEMI was 11%, for NSTEMI 8% and UA 4%. Thrombolysis (for STEMI only) reduced in-hospital and 30-day mortality by nearly 50%. Percutaneous coronary intervention or PCI also reduced 30-day mortality for patients with non-ST elevation MI and unstable angina. The strongest determinants of mortality appears to be Killip Class and age of the patient. Fewer women received

  10. Comorbidity profile in dementia with Lewy bodies versus Alzheimer’s disease: a linkage study between the Swedish Dementia Registry and the Swedish National Patient Registry

    PubMed Central

    2014-01-01

    Introduction Compared to Alzheimer’s disease (AD), dementia with Lewy bodies (DLB) is usually associated with a more complex clinical picture and higher burden of care. Yet, few investigations have been performed on comorbidities and risk factors of DLB. Therefore, we aimed to compare clinical risk factors and comorbidity profile in DLB and AD patients using two nationwide registries. Methods This is a linkage study between the Swedish dementia registry (SveDem) and the Swedish National Patient Registry conducted on 634 subjects with DLB and 9161 individuals with AD registered during the years 2007–2012. Comorbidity profile has been coded according to the International Classification of Diseases version 10 (ICD 10) in addition to the date of each event. The main chapters of the ICD-10, the Charlson score of comorbidities and a selected number of neuropsychiatric diseases were compared between the DLB and AD groups. Comorbidity was registered before and after the dementia diagnosis. Results “Mental and behavioral disorders”, “diseases of the nervous system”, “diseases of the eye and adnexa”, diseases of the “circulatory”, “respiratory”, and “genitourinary” systems, “diseases of the skin and subcutaneous tissue” and “diseases of the musculoskeletal system and connective tissue” occurred more frequently in the DLB group after multivariate adjustment. Depression [adjusted OR = 2.12 (95%CI 1.49 to 3.03)] and migraine [adjusted OR = 3.65 (95%CI 1.48 to 9.0)] were more commonly recorded before the diagnosis of dementia in the DLB group. Following dementia diagnosis, ischemic stroke [adjusted OR = 1.89 (95%CI 1.21 to 2.96)] was more likely to happen among the DLB patients compared to the AD population. Conclusions Our study indicated a worse comorbidity profile in DLB patients with higher occurrence of depression, stroke and migraine compared with the AD group. Deeper knowledge about the underlying mechanisms of these

  11. Iranian Joint Registry (Iranian National Hip and Knee Arthroplasty Registry)

    PubMed Central

    Aslani, Hamidreza; Nourbakhsh, Seyed Taghi; Lahiji, Farivar A.; Heydarian, Keykavoos; Jabalameli, Mahmood; Ghazavi, Mohammad Taghi; Tahmasebi, Mohammad Naghi; Fayyaz, Mahmoud Reza; Sazegari, Mohammad Ali; Mohaddes, Maziar; Rajabpour, Mojtaba; Emami, Mohammad; Jazayeri, Seyyed Mohammad; Madadi, Firooz; Farahini, Hossein; Mirzatoloee, Fardin; Gharahdaghi, Mohammad; Ebrahimzadeh, Mohammad Hossein; Ebrahimian, Mohammadreza; Mirvakili, Hossein; Bashti, Kaveh; Almasizadeh, Mohtasham; Abolghasemian, Mansour; Taheriazam, Afshin; Motififard, Mehdi; Yazdi, Hamidreza; Mobarakeh, Mahmood Karimi; Shayestehazar, Masoud; Moghtadae, Mehdi; Siavashi, Babak; Sajjadi, Mohammadreza M.; Rasi, Alireza Manafi; Chabok, Seyyed Kazem; Zafarani, Zohreh; Salehi, Shahin; Ahmadi, Monireh; Mohammadi, Amin; Shahsavand, Mohammad Ebrahim

    2016-01-01

    Periodic evaluation and monitoring the health and economic outcome of joint replacement surgery is a common and popular process under the territory of joint registries in many countries. In this article we introduce the methodology used for the foundation of the National Iranian Joint Registry (IJR) with a joint collaboration of the Social Security Organization (SSO) and academic research departments considering the requirements of the Iran’s Ministry of Health and Education. PMID:27200403

  12. New registry: National Cancer Patient Registry--Colorectal Cancer.

    PubMed

    Wendy, L; Radzi, M

    2008-09-01

    Colorectal cancer is emerging as one of the commonest cancers in Malaysia. Data on colorectal cancer from the National Cancer Registry is very limited. Comprehensive information on all aspects of colorectal cancer, including demographic details, pathology and treatment outcome are needed as the management of colorectal cancer has evolved rapidly over the years involving several disciplines including gastroenterology, surgery, radiology, pathology and oncology. This registry will be an important source of information that can help the development of guidelines to improve colorectal cancer care relevant to this country. The database will initially recruit all colorectal cancer cases from eight hospitals. The data will be stored on a customized web-based case report form. The database has begun collecting data from 1 October 2007 and will report on its first year findings at the end of 2008. PMID:19230248

  13. Clinical disease registries in acute myocardial infarction

    PubMed Central

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

    2014-01-01

    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. PMID:24976913

  14. 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. PMID:19227671

  15. 75 FR 65629 - Modification of the Annual National Registry Fee

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-10-26

    ... INSTITUTIONS EXAMINATION COUNCIL Modification of the Annual National Registry Fee AGENCY: Appraisal... the annual National Registry fee to $40. SUMMARY: Under authority in the Dodd-Frank Wall Street Reform... Registry fee (Registry fee) to $40 from the current $25 amount at its meeting on October 13, 2010. The...

  16. Safety and clinical outcomes of rituximab therapy in patients with different autoimmune diseases: experience from a national registry (GRAID)

    PubMed Central

    2011-01-01

    Introduction Evidence from a number of open-label, uncontrolled studies has suggested that rituximab may benefit patients with autoimmune diseases who are refractory to standard-of-care. The objective of this study was to evaluate the safety and clinical outcomes of rituximab in several standard-of-care-refractory autoimmune diseases (within rheumatology, nephrology, dermatology and neurology) other than rheumatoid arthritis or non-Hodgkin's lymphoma in a real-life clinical setting. Methods Patients who received rituximab having shown an inadequate response to standard-of-care had their safety and clinical outcomes data retrospectively analysed as part of the German Registry of Autoimmune Diseases. The main outcome measures were safety and clinical response, as judged at the discretion of the investigators. Results A total of 370 patients (299 patient-years) with various autoimmune diseases (23.0% with systemic lupus erythematosus, 15.7% antineutrophil cytoplasmic antibody-associated granulomatous vasculitides, 15.1% multiple sclerosis and 10.0% pemphigus) from 42 centres received a mean dose of 2,440 mg of rituximab over a median (range) of 194 (180 to 1,407) days. The overall rate of serious infections was 5.3 per 100 patient-years during rituximab therapy. Opportunistic infections were infrequent across the whole study population, and mostly occurred in patients with systemic lupus erythematosus. There were 11 deaths (3.0% of patients) after rituximab treatment (mean 11.6 months after first infusion, range 0.8 to 31.3 months), with most of the deaths caused by infections. Overall (n = 293), 13.3% of patients showed no response, 45.1% showed a partial response and 41.6% showed a complete response. Responses were also reflected by reduced use of glucocorticoids and various immunosuppressives during rituximab therapy and follow-up compared with before rituximab. Rituximab generally had a positive effect on patient well-being (physician's visual analogue scale; mean

  17. NATIONAL CONGENITAL RUBELLA SYNDROME REGISTRY (NCRSR)

    EPA Science Inventory

    The system compiles information on all U.S. congenital rubella syndrome cases. The registry includes cases reported to CDC since 1969. Information collected includes demographic data, laboratory results, and disease symptoms. These data are used to calculate incidence rates and o...

  18. Inherited Retinal Degenerative Disease Registry

    ClinicalTrials.gov

    2016-03-21

    Eye Diseases Hereditary; Retinal Disease; Achromatopsia; Bardet-Biedl Syndrome; Bassen-Kornzweig Syndrome; Batten Disease; Best Disease; Choroidal Dystrophy; Choroideremia; Cone Dystrophy; Cone-Rod Dystrophy; Congenital Stationary Night Blindness; Enhanced S-Cone Syndrome; Fundus Albipunctatus; Goldmann-Favre Syndrome; Gyrate Atrophy; Juvenile Macular Degeneration; Kearns-Sayre Syndrome; Leber Congenital Amaurosis; Refsum Syndrome; Retinitis Pigmentosa; Retinitis Punctata Albescens; Retinoschisis; Rod-Cone Dystrophy; Rod Dystrophy; Rod Monochromacy; Stargardt Disease; Usher Syndrome

  19. 77 FR 18248 - Agency for Toxic Substances and Disease Registry; Agency Forms Undergoing Paperwork Reduction Act...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-03-27

    ... HUMAN SERVICES Agency for Toxic Substances and Disease Registry; Agency Forms Undergoing Paperwork Reduction Act Review The Centers for Disease Control and Prevention (CDC) publishes a list of information... in the Navajo Nation--New--Agency for Toxic Substances and Disease Registry (ATSDR) and Centers...

  20. The National Exposure Registry: procedures for establishing a registry of persons environmentally exposed to hazardous substances.

    PubMed

    Burg, J R; Gist, G L

    1995-01-01

    The Agency for Toxic Substances and Disease Registry has, as mandated in Superfund legislation, established the National Exposure Registry (NER). The purpose of the NER is to assess and evaluate the potential relationship between adverse health effects and environmental exposure for an exposed population, particularly the relationship between chronic health effects and long-term, low-level chemical exposures. The NER's primary goal is to facilitate epidemiology research by establishing multiple data bases (subregistries) that contain demographic, environmental, and health information on large populations exposed to selected chemicals. The Registry data mainly serve the purpose of being hypothesis-generating rather than hypothesis-testing. The NER is currently composed of subregistries of: (1) persons exposed to volatile organic compounds (VOCs)--a subset of registrants in whom trichloroethylene (TCE) is the primary VOC exposure, but others are present (N = 4,832), a subset in whom benzene is the primary VOC exposure (N = 1,142), and a subset in whom trichloroethane (TCA) and TCE are the highest VOC exposures (N = 3,666); and (2) persons with dioxin exposure (N = 250). Chromium and radioactive substances subregistries are planned. PMID:7491637

  1. 76 FR 9578 - National Center for Environmental Health/Agency for Toxic Substances and Disease Registry (NCEH...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-02-18

    ... Health and Chemical Exposures Leadership Council. The National Conversation on Public Health and Chemical... an action agenda for strengthening the nation's approach to protecting the public's health from... National Conversation on Public Health and Chemical Exposures, visit this Web site:...

  2. 76 FR 28403 - National Registry of Certified Medical Examiners

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-05-17

    ... of a National Registry of Certified Medical Examiners (National Registry), 73 FR 73129. The National... medical examiners about FMCSA's physical qualification standards. See 73 FR 73132-33. However, the Agency... Register published on January 17, 2008 (73 FR 3316) at...

  3. 76 FR 14366 - National Registry of Certified Medical Examiners

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-03-16

    ... National Registry of Certified Medical Examiners (NRCME) published on December 1, 2008 (73 FR 73129). Other... Federal Register (73 FR 3316). Title: National Registry of Certified Medical Examiners (NRCME). Summary... 73 FR at 73140-42). Public Participation and Request for Comments: We encourage you to...

  4. 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 Missouri…

  5. 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

  6. Ethnic differences in the occurrence of acute coronary syndrome: results of the Malaysian National Cardiovascular Disease (NCVD) Database Registry (March 2006 - February 2010)

    PubMed Central

    2013-01-01

    Background The National Cardiovascular Disease (NCVD) Database Registry represents one of the first prospective, multi-center registries to treat and prevent coronary artery disease (CAD) in Malaysia. Since ethnicity is an important consideration in the occurrence of acute coronary syndrome (ACS) globally, therefore, we aimed to identify the role of ethnicity in the occurrence of ACS among high-risk groups in the Malaysian population. Methods The NCVD involves more than 15 Ministry of Health (MOH) hospitals nationwide, universities and the National Heart Institute and enrolls patients presenting with ACS [ST-elevation myocardial infarction (STEMI), non-ST elevation myocardial infarction (NSTEMI) and unstable angina (UA)]. We analyzed ethnic differences across socio-demographic characteristics, hospital medications and invasive therapeutic procedures, treatment of STEMI and in-hospital clinical outcomes. Results We enrolled 13,591 patients. The distribution of the NCVD population was as follows: 49.0% Malays, 22.5% Chinese, 23.1% Indians and 5.3% Others (representing other indigenous groups and non-Malaysian nationals). The mean age (SD) of ACS patients at presentation was 59.1 (12.0) years. More than 70% were males. A higher proportion of patients within each ethnic group had more than two coronary risk factors. Malays had higher body mass index (BMI). Chinese had highest rate of hypertension and hyperlipidemia. Indians had higher rate of diabetes mellitus (DM) and family history of premature CAD. Overall, more patients had STEMI than NSTEMI or UA among all ethnic groups. The use of aspirin was more than 94% among all ethnic groups. Utilization rates for elective and emergency percutaneous coronary intervention (PCI) and coronary artery bypass graft (CABG) were low among all ethnic groups. In STEMI, fibrinolysis (streptokinase) appeared to be the dominant treatment options (>70%) for all ethnic groups. In-hospital mortality rates for STEMI across ethnicity ranges

  7. Establishing a National Medical Device Registry in Saudi Arabia: Lessons Learned and Future Work.

    PubMed

    Al-Surimi, Khaled; Househ, Mowafa; Almohandis, Essam; Alshagathrh, Fahd

    2015-01-01

    Medical device evaluation presents several unique challenges due to the great diversity and complexity of medical devices and their rapid technological evolution. There has been a variety of work conducted on the development of disease based registries and health surveillance systems in Saudi Arabia. However, the progress of medical device registry systems and post-market medical device surveillance systems remains in its infancy in Saudi Arabia and within the region. In 2007, a royal decree assigned the responsibility for regulating medical devices to the Saudi Food and Drug Authority (SFDA). Soon afterwards, the SFDA established the Medical Devices National Registry (MDNR) to house medical device information relating to manufacturers, agents, suppliers and end-users. The aim of this paper is to provide an overview on the Medical Device National Registry (MDNR) in Saudi Arabia and describe the current experience and future work of establishing a comprehensive medical device registry and post-market surveillance system in Saudi Arabia. PMID:26152943

  8. The National Anesthesia Clinical Outcomes Registry.

    PubMed

    Liau, Adrian; Havidich, Jeana E; Onega, Tracy; Dutton, Richard P

    2015-12-01

    The Anesthesia Quality Institute (AQI) was chartered in 2008 by the American Society of Anesthesiologists to develop the National Anesthesia Clinical Outcomes Registry (NACOR). In this Technical Communication, we will describe how data enter NACOR, how they are authenticated, and how they are analyzed and reported. NACOR accepts case-level administrative, clinical, and quality capture data from voluntarily participating anesthesia practices and health care facilities in the United States. All data are transmitted to the AQI in summary electronic files generated by billing, quality capture, and electronic health care record software, typically on a monthly basis. All data elements are mapped to fields in the NACOR schema in accordance with a publicly available data dictionary. Incoming data are loaded into NACOR by AQI technologists and are subject to both manual and automated review to identify systematically missing elements, miscoding, and inadvertent corruption. Data are deidentified in compliance with Health Insurance Portability and Accountability Act regulations. The database server of AQI, which houses the NACOR database, is protected by 2 firewalls within the American Society of Anesthesiologists' network infrastructure; this system has not been breached. The NACOR Participant User File, a deidentified case-level dataset of information from NACOR, is available to researchers at participating institutions. NACOR architecture and the nature of the Participant User File include both strengths and weaknesses. PMID:26579661

  9. Positive predictive value and completeness of prenatally assigned International Classification of Disease-10 kidney anomaly diagnoses in the Danish National Patient Registry

    PubMed Central

    Rasmussen, Maria; Olsen, Morten Smærup; Sunde, Lone; Pedersen, Lars; Petersen, Olav Bjørn

    2016-01-01

    Objective Restricting studies of severe congenital malformations to live-born children may introduce substantial bias. In this study, we estimated the attendance to the second-trimester fetal malformation screening program. We also estimated the positive predictive value (PPV) of prenatally assigned International Classification of Disease-10 diagnoses recorded in the Danish National Patient Registry (DNPR) and the completeness of case registration. We used kidney anomalies as an example. Methods We identified the proportion of all Danish live-born children from January 1, 2007 to December 31, 2012, who were scanned during the second trimester using the DNPR and the Civil Registration System. Details of all fetuses with specific kidney anomaly diagnoses according to the DNPR were retrieved. The PPV was estimated using the nationwide Astraia database of pregnancy medical charts or traditional medical charts, as gold standard. The completeness was assessed using the total number of cases estimated by the capture–recapture method. Results Of 372,263 live born infants, 97.3% were scanned during the second trimester. We identified 172 fetuses in the DNPR. Of these, 149 had kidney anomalies according to Astraia or medical chart review, corresponding to a PPV of 87% (95% CI: 81%–91%). The estimated completeness was 43% (95% CI: 38%–49%) for the DNPR and 75% (95% CI: 70%–79%) for Astraia. Conclusion Almost all live-born children were scanned during the second trimester in Denmark. However, low completeness may hamper the use of the DNPR for studies of prenatally detected severe malformations, and use of the Astraia database may preferably be considered. PMID:26855599

  10. Agency for Toxic Substances and Disease Registry

    MedlinePlus

    ... Mandate Congressional Testimony Board of Scientific Counselors Regional Offices Program Overview ATSDR en Español A-Z Index Multimedia Tools Special Initiatives Publications Sites Toxic Substances Health Registries ...

  11. Portuguese National Registry on Cardiac Electrophysiology, 2013 and 2014.

    PubMed

    Cavaco, Diogo; Morgado, Francisco; Bonhorst, Daniel

    2016-01-01

    The authors present the results of the national registry of electrophysiology of the Portuguese Association for Arrhythmology, Pacing and Electrophysiology (APAPE) for 2013 and 2014. The registry is annual and voluntary, and data are collected retrospectively. Data for electrophysiological studies, ablations and cardioverter-defibrillator implantations for 2013 and 2014 are presented. Developments over the years and their implications are analyzed and discussed. PMID:27396627

  12. National exposure registry: Tichloroethylene (TCE) subregistry (on CD-ROM). Data file

    SciTech Connect

    Not Available

    1995-01-01

    The 1994 National Exposure Registry: Trichloroethylene (TCE) Subregistry' contains data on approximately 4,000 persons and is the first CD-ROM product released in the National Exposure Registry Series. This CD-ROM is composed of three files: Demographics and Health, Mortality, and Environmental. The CD-ROM includes access software, the Statistical Export and Tabulation System (SETS). The TCE subregistry is one of three (dioxin and benzene subregistries are the other two). The National Exposure Registry was created in response to a mandate given in the Comprehensive Environmental Response, Compensation and Liability Act (CERCLA) of 1980 to the Agency for Toxic Substances and Disease Registry (ATSDR) to create a registry of persons exposed to hazardous substances. This mandate was reiterated in the Superfund Amendments and Reauthorization Act (SARA) of 1986. The National Exposure Registry is a database composed of names of persons, along with additional information on these persons, with documented exposure to specific chemicals. The purpose of the Registry is to aid in assessing the long-term health consequences of low-level, long-term exposure to environmental contaminants. One of the goals is to establish a database that will furnish the information needed to generate appropriate and valid hypotheses for future activities such as epidemiological studies. When supplemented with additional data, the combined file can then be used to carry out hypothesis-testing epidemiological investigations. The data collected for each member of the Registry include environmental levels, demographic information, smoking and occupational history, and self-reported responses to 25 general health status questions. The files for each chemical-specific subregistry are established at the time baseline data are collected and are updated and maintained by ATSDR on an ongoing basis (annually the first year, biennially thereafter).

  13. 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

  14. Creating an effective clinical registry for rare diseases.

    PubMed

    D'Agnolo, Hedwig Ma; Kievit, Wietske; Andrade, Raul J; Karlsen, Tom Hemming; Wedemeyer, Heiner; Drenth, Joost Ph

    2016-06-01

    The exposure of clinicians to patients with rare gastrointestinal diseases is limited. This hurts clinical studies, which impedes accumulation of scientific knowledge on the natural disease course, treatment outcomes and prognosis in these patients. An excellent method to detect patterns on an aggregate level that would not be possible to discover in individual cases, is a registry study. This paper aims to describe a template to create a successful international registry for rare diseases. We focus mainly on rare hepatic diseases, but lessons from this paper serve other fields in medicine, as well. PMID:27403298

  15. Creating an effective clinical registry for rare diseases

    PubMed Central

    D’Agnolo, Hedwig MA; Kievit, Wietske; Andrade, Raul J; Karlsen, Tom Hemming; Wedemeyer, Heiner

    2015-01-01

    The exposure of clinicians to patients with rare gastrointestinal diseases is limited. This hurts clinical studies, which impedes accumulation of scientific knowledge on the natural disease course, treatment outcomes and prognosis in these patients. An excellent method to detect patterns on an aggregate level that would not be possible to discover in individual cases, is a registry study. This paper aims to describe a template to create a successful international registry for rare diseases. We focus mainly on rare hepatic diseases, but lessons from this paper serve other fields in medicine, as well. PMID:27403298

  16. Data management of an inflammatory bowel disease registry.

    PubMed

    Reed, J F; Moser, K A; Faust, L A; Mills, S

    1992-06-01

    The history and etiology of inflammatory bowel disease which is characterized by two major disease processes: ulcerative colitis and Crohn's disease, remain unknown. Research is focussing on seven major areas of genetic, environmental and physiologic factors that apparently relate to this disease. Based on this background, a population based Inflammatory Bowel Disease Registry was established in 1987 in the Lehigh Valley area of southeastern Pennsylvania. Consent forms, patient data forms and protocols for operation and implementation were developed, and databases were designed to accommodate demographic, basic history, follow-up and relative history data. The databases were correlated with an IBD registry ID number which both enabled relational analyses and ensured confidentiality of data information. The registry continues to grow, providing feedback for both continued medical research and supportive information for IBD patients and their physicians. PMID:1402437

  17. National Marrow Donor Program and Be The Match Registry

    MedlinePlus

    ... version of this page please turn Javascript on. Feature: Bone Marrow Transplants The National Marrow Donor Program and Be The Match Registry Past Issues / Summer 2011 Table of Contents Creating connections. Saving lives. Founded in 1987 by the federal government, the ...

  18. 77 FR 24103 - National Registry of Certified Medical Examiners

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-04-20

    ... complete Privacy Act Statement, published in the Federal Register on April 11, 2000 (65 FR 19476), or you...) to establish the National Registry (73 FR 73129). The public comment period for the NPRM closed on... CMV drivers (57 FR 33276; July 28, 1992). All medical examiners were required to be...

  19. 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. PMID:22753342

  20. Inception of a national multidisciplinary registry for stereotactic radiosurgery.

    PubMed

    Sheehan, Jason P; Kavanagh, Brian D; Asher, Anthony; Harbaugh, Robert E

    2016-01-01

    Stereotactic radiosurgery (SRS) represents a multidisciplinary approach to the delivery of ionizing high-dose radiation to treat a wide variety of disorders. Much of the radiosurgical literature is based upon retrospective single-center studies along with a few randomized controlled clinical trials. More timely and effective evidence is needed to enhance the consistency and quality of and clinical outcomes achieved with SRS. The authors summarize the creation and implementation of a national SRS registry. The American Association of Neurological Surgeons (AANS) through NeuroPoint Alliance, Inc., started a successful registry effort with its lumbar spine initiative. Following a similar approach, the AANS and NeuroPoint Alliance collaborated with corporate partners and the American Society for Radiation Oncology to devise a data dictionary for an SRS registry. Through administrative and financial support from professional societies and corporate partners, a framework for implementation of the registry was created. Initial plans were devised for a 3-year effort encompassing 30 high-volume SRS centers across the country. Device-specific web-based data-extraction platforms were built by the corporate partners. Data uploaders were then used to port the data to a common repository managed by Quintiles, a national and international health care trials company. Audits of the data for completeness and veracity will be undertaken by Quintiles to ensure data fidelity. Data governance and analysis are overseen by an SRS board comprising equal numbers of representatives from the AANS and NeuroPoint Alliance. Over time, quality outcome assessments and post hoc research can be performed to advance the field of SRS. Stereotactic radiosurgery offers a high-technology approach to treating complex intracranial disorders. Improvements in the consistency and quality of care delivered to patients who undergo SRS should be afforded by the national registry effort that is underway. PMID

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

    PubMed

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

    2015-06-01

    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

  2. International Registry for Patients With Castleman Disease

    ClinicalTrials.gov

    2016-06-24

    Castleman Disease; Castleman's Disease; Giant Lymph Node Hyperplasia; Angiofollicular Lymph Hyperplasia; Angiofollicular Lymph Node Hyperplasia; Angiofollicular Lymphoid Hyperplasia; GLNH; Hyperplasia, Giant Lymph Node; Lymph Node Hyperplasia, Giant

  3. Disease Registries on the Nationwide Health Information Network

    PubMed Central

    Russler, Daniel

    2011-01-01

    Background: Donation by individuals of their protected health information (PHI) for evidence-based research potentially benefits all individuals with disease through improved understandings of disease patterns. In the future, a better understanding of how disease features combine into unique patterns of disease will generate new disease classifications, supporting greater specificity in health management techniques. However, without large numbers of people who donate their PHI to disease registries designed for research, it is difficult for researchers to discover the existence of complex patterns or to create more specific evidence-based management techniques. In order to identify new opportunities in disease registry design, an analysis of the current stage of maturity of the newly created U.S. Nationwide Health Information Network (NwHIN) related to large-scale consumer donation of PHI is presented. Methods: Utilizing a use–case analysis methodology, the consumer-centric designs of the policies and technologies created for the NwHIN were examined for the potential to support consumer donations of PHI to research. Results: The NwHIN design has placed the enforcement point for the policy-based release of PHI over the Internet into a specialized gateway accessible to consumer authorization. However, current NwHIN policies leave the final decision regarding release of PHI for research to the health care providers rather than to the consumers themselves. Conclusions: Should disease registries designed for research be established on the NwHIN, consumers might then directly authorize the donation of their PHI to these disease registries. However, under current NwHIN policies, consumer authorization does not guarantee release of PHI by health providers. PMID:21722569

  4. Developing National Cancer Registration in Developing Countries – Case Study of the Nigerian National System of Cancer Registries

    PubMed Central

    Jedy-Agba, Elima E.; Oga, Emmanuel A.; Odutola, Michael; Abdullahi, Yusuf M.; Popoola, Abiodun; Achara, Peter; Afolayan, Enoch; Banjo, Adekunbiola Aina Fehintola; Ekanem, Ima-Obong; Erinomo, Olagoke; Ezeome, Emmanuel; Igbinoba, Festus; Obiorah, Christopher; Ogunbiyi, Olufemi; Omonisi, Abidemi; Osime, Clement; Ukah, Cornelius; Osinubi, Patience; Hassan, Ramatu; Blattner, William; Dakum, Patrick; Adebamowo, Clement A.

    2015-01-01

    The epidemiological transition in sub-Saharan Africa (SSA) has given rise to a concomitant increase in the incidence of non-communicable diseases including cancers. Worldwide, cancer registries have been shown to be critical for the determination of cancer burden, conduct of research, and in the planning and implementation of cancer control measures. Cancer registration though vital is often neglected in SSA owing to competing demands for resources for healthcare. We report the implementation of a system for representative nation-wide cancer registration in Nigeria – the Nigerian National System of Cancer Registries (NSCR). The NSCR coordinates the activities of cancer registries in Nigeria, strengthens existing registries, establishes new registries, complies and analyses data, and makes these freely available to researchers and policy makers. We highlight the key challenges encountered in implementing this strategy and how they were overcome. This report serves as a guide for other low- and middle-income countries (LMIC) wishing to expand cancer registration coverage in their countries and highlights the training, mentoring, scientific and logistic support, and advocacy that are crucial to sustaining cancer registration programs in LMIC. PMID:26284233

  5. Preliminary Results of National Amyotrophic Lateral Sclerosis (ALS) Registry Risk Factor Survey Data

    PubMed Central

    2016-01-01

    Background The National ALS Registry is made up of two components to capture amyotrophic lateral sclerosis (ALS) cases: national administrative databases (Medicare, Medicaid, Veterans Health Administration and Veterans Benefits Administration) and self-identified cases captured by the Registry’s web portal. This study describes self-reported characteristics of U.S. adults with ALS using the data collected by the National ALS Registry web portal risk factor surveys only from October 19, 2010 through December 31, 2013. Objective To describe findings from the National ALS Registry’s web portal risk factor surveys. Measurements The prevalence of select risk factors among adults with ALS was determined by calculating the frequencies of select risk factors—smoking and alcohol (non, current and former) histories, military service and occupational history, and family history of neurodegenerative diseases such as ALS, Alzheimer’s and/or Parkinson’s. Results Nearly half of survey respondents were ever smokers compared with nearly 41% of adults nationally. Most respondents were ever drinkers which is comparable to national estimates. The majority were light drinkers. Nearly one-quarter of survey respondents were veterans compared with roughly 9% of US adults nationally. Most respondents were retired or disabled. The industries in which respondents were employed for the longest time were Professional and Scientific and Technical Services. When family history of neurodegenerative diseases in first degree relatives was evaluated against our comparison group, the rates of ALS were similar, but were higher for Parkinson’s disease, Alzheimer’s disease and any neurodegenerative diseases. Conclusions The National ALS Registry web portal, to our knowledge, is the largest, most geographically diverse collection of risk factor data about adults living with ALS. Various characteristics were consistent with other published studies on ALS risk factors and will allow

  6. Using Registries to Identify Adverse Events in Rheumatic Diseases

    PubMed Central

    Lionetti, Geraldina; Kimura, Yukiko; Schanberg, Laura E.; Beukelman, Timothy; Wallace, Carol A.; Ilowite, Norman T.; Winsor, Jane; Fox, Kathleen; Natter, Marc; Sundy, John S.; Brodsky, Eric; Curtis, Jeffrey R.; Del Gaizo, Vincent; Iyasu, Solomon; Jahreis, Angelika; Meeker-O’Connell, Ann; Mittleman, Barbara B.; Murphy, Bernard M.; Peterson, Eric D.; Raymond, Sandra C.; Setoguchi, Soko; Siegel, Jeffrey N.; Sobel, Rachel E.; Solomon, Daniel; Southwood, Taunton R.; Vesely, Richard; White, Patience H.; Wulffraat, Nico M.; Sandborg, Christy I.

    2013-01-01

    The proven effectiveness of biologics and other immunomodulatory products in inflammatory rheumatic diseases has resulted in their widespread use as well as reports of potential short- and long-term complications such as infection and malignancy. These complications are especially worrisome in children who often have serial exposures to multiple immunomodulatory products. Post-marketing surveillance of immunomodulatory products in juvenile idiopathic arthritis (JIA) and pediatric systemic lupus erythematosus is currently based on product-specific registries and passive surveillance, which may not accurately reflect the safety risks for children owing to low numbers, poor long-term retention, and inadequate comparators. In collaboration with the US Food and Drug Administration (FDA), patient and family advocacy groups, biopharmaceutical industry representatives and other stakeholders, the Childhood Arthritis and Rheumatology Research Alliance (CARRA) and the Duke Clinical Research Institute (DCRI) have developed a novel pharmacosurveillance model (CARRA Consolidated Safety Registry [CoRe]) based on a multicenter longitudinal pediatric rheumatic diseases registry with over 8000 participants. The existing CARRA infrastructure provides access to much larger numbers of subjects than is feasible in single-product registries. Enrollment regardless of medication exposure allows more accurate detection and evaluation of safety signals. Flexibility built into the model allows the addition of specific data elements and safety outcomes, and designation of appropriate disease comparator groups relevant to each product, fulfilling post-marketing requirements and commitments. The proposed model can be applied to other pediatric and adult diseases, potentially transforming the paradigm of pharmacosurveillance in response to the growing public mandate for rigorous post-marketing safety monitoring. PMID:24144710

  7. Observing Huntington’s Disease: the European Huntington’s Disease Network’s REGISTRY

    PubMed Central

    Orth, Michael; Handley, Olivia J; Schwenke, Carsten; Dunnett, Stephen B.; Craufurd, David; Ho, Aileen K; Wild, Edward; Tabrizi, Sarah J; Landwehrmeyer, G. Bernhard; Bonelli, Raphael M.; Herranhof, Brigitte; Hödl, Anna; Koppitz, Michael; Magnet, Markus; Otti, Daniela; Painold, Annamaria; Reisinger, Karin; Flamez, Anja; Morez, Vera; de Raedt, Sylvie; Ribaï, Pascale; Verellen-Dumoulin, Christine; Vandenberghe, Wim; van Reijen, Dimphna; Hasholt, Lis; Hjermind, Lena E.; Jakobsen, Oda; Nørremølle, Anne; Sørensen, Sven Asger; Stokholm, Jette; Peippo, Maarit; Sipponen, Marjatta; Hiivola, Heli; Martikainen, Kirsti; Tuuha, Katri; Kosinski, Christoph Michael; Probst, Daniela; Sass, Christian; Schiefer, Johannes; Schlangen, Christiane; Werner, Cornelius J.; Priller, Josef; Prüß, Harald; Andrich, Jürgen; Hoffmann, Rainer; Kraus, Peter; Prehn, Christian; Saft, Carsten; Salmen, Stephan; Straßburger, Katrin; Lange, Herwig; Hunger, Ulrike; Löhle, Matthias; Schmidt, Simone; Storch, Alexander; Wolz, Anett; Wolz, Martin; Lammbeck, Johann; Zucker, Birgit; Hidding, Ute; Münchau, Alexander; Orth, Michael; Stubbe, Lars; Heinicke, Walburgis; Orth, Michael; Longinus, Bernhard; Möller, Jens Carsten; Rissling, Ida; Peinemann, Alexander; Städtler, Michael; Weindl, Adolf; Bohlen, Stefan; Lange, Herwig; Reilmann, Ralf; Beister, Antonie; Dose, Matthias; Leythaeuser, Gabriele; Marquard, Ralf; Schrenk, Caroline; Schuierer, Michele; Wiedemann, Alexandra; Ecker, Daniel; Landwehrmeyer, Bernhard; Lezius, Franziska; Trautmann, Sonja; Bertini, Elisabetta; Mechi, Claudia; Paganini, Marco; Piacentini, Sivia; Romoli, Maria; Sorbi, Sandro; Abbruzzese, Giovanni; di Poggio, Monica Bandettini; Di Maria, Emilio; Ferrandes, Giovanna; Mandich, Paola; Marchese, Roberta; Albanese, Alberto; Di Donato, Stefano; Mariotti, Caterina; Soliveri, Paola; Carlo, Rinaldi; Luigi, Di Maio; De Michele, Giuseppe; Rinaldi, Carlo; Salvatore, Elena; Tucci, Tecla; Ciarmiello, Andrea; Martino, Tiziana; Simonelli, Maria; Squitieri, Ferdinando; Bentivoglio, Anna Rita; Fasano, Alfonso; Frontali, Marina; Guidubaldi, Arianna; Ialongo, Tamara; Jacopini, Gioia; Loria, Giovanna; Piano, Carla; Romano, Silvia; Soleti, Francesco; Spadaro, Maria; Zinzi, Paola; Heiberg, Arvid; van Walsem, Marleen R; Bjørgo, Kathrine; Fannemel, Madelein; Lars Retterstøl, Per Gørvell.; Bjørnevoll, Inga; Sando, Sigrid Botne; Sitek, Emilia Jadwiga; Slawek, Jaroslaw; Soltan, Witold; Boczarska-Jedynak, Magdalena; Jasinska-Myga, Barbara; Opala, Gregorz; Rudzińska, Monika; Szczudlik, Andrzej; Wójcik, Magdalena; Banaszkiewicz, Krzysztof; Bryl, Anna; Ciesielska, Anna; Klimberg, Aneta; Kozubski, Wojciech; Marcinkowski, Jerzy; Sempołowicz, Pani Justyna; Zielonka, Daniel; Janik, Piotr; Kalbarczyk, Anna; Kwiecinski, Hubert; Jamrozik, Zygmunt; Antczak, Jakub; Witkowski, Grzegorz; Rakowicz, Maryla; Richter, Przemyslaw; Ryglewicz, Danuta; Zaremba, Jacek; Zdzienicka, Elzbieta; Costa, Christina; Coelho, Miguel; Ferreira, Joaquim J; Mestre, Tiago; Rosa, Mário M; Valadas, Anabela; Gago, Miguel; Garrett, Carolina; Guerra, Maria Rosalia; Bas, Jordi; Calopa, Matilde; Barberà, Miquel Aguilar; Badenes, Dolores; Casas, Laura; Arroyo, Sonia Escalante; Vara, Jorge Hernández; Krupinski, Jerzy; López, Judith; Obdulia, Marta; Ferrer, Pilar Quilez; Sebastián, Ana Rojo; Contreras, Silvia Romero; Carruesco, Gemma Tome; Cubo, Esther; Mariscal, Natividad; Sánchez, Jesús; Barrero, Francisco J; Morales, Blas; López-Sendón Moreno, José Luis; García, Rocío García-Ramos; Quiroga, Purificacion Pin; Villanueva, Clara; Ruíz-Espiga, Pedro-José García; Martínez, Asunción; Artiga, María José Saiz; Sánchez, Vicenta; Bascuñana, Mónica; Fatas, Marta; Ribas, Guillermo García; de Yébenes, Justo García; López Moreno, José Luis; Schwarz, Christine; Cubillo, Patricia Trigo; Arques, Penelope Navas; Gorospe, Aranzazú; Legarda, Inés; Torres Rodríguez, María José; Gaston, Itziar; Ramos-Arroyo, Maria A.; del Val, Javier López; Martinez, Laura; Burgunder, Jean-Marc; Romero, Irene; Schüpbach, Michael; Zaugg, Sabine Weber; van Hout, Monique S.E.; van Vugt, Jeroen P.P.; de Weert, A. Marit; Bolwijn, J.J.W.; Dekker, Meike; Leenders, K.L.; van Oostrom, Joost.C.H.; Bos, Reineke; Dumas, Eve; Jurgens, Caroline K.; Roos, Raymund A.C.; Witjes-Ané, Marie-Noëlle; Matheson, Kirsty; Rae, Daniela; Simpson, Sheila; Summers, Fiona; Ure, Alexandra; Curtis, Adrienne; Keylock, Jenny; Rickards, Hugh; Wright, Jan; Barker, Roger A.; Fisher, Kate; Goodman, Anna Olivia Goyder; Hill, Susan; Kershaw, Ann; Mason, Sarah; Paterson, Nicole; Raymond, Lucy; Bisson, Jon; Busse, Monica; Ellison-Rose, Lynda; Handley, Olivia; Dunnett, SB; Naji, Jenny; Price, Kathy; Rosser, Anne; Edwards, Maureen; De Sousa, Paul A.; Hughes, Teresa; McGill, Marie; Pearson, Pauline; Porteous, Mary; Zema, Adam; Brockie, Peter; Foster, Jillian; Johns, Nicola; McKenzie, Sue; Thomas, Gareth; Burrows, Liz; Fletcher, Amy; Laver, Fiona; Silva, Mark; Thomson, Aileen; Chu, Carol; Hobson, Emma; Jamieson, Stuart; Toscano, Jean; Wild, Sue; Yardumian, Pam; Bourne, Colin; Clayton, Carole; Dipple, Heather; Grant, Janet; Gross, Diana; Hallam, Caroline; Middleton, Julia; Murch, Ann; Andrews, Thomasin; Dougherty, Andrew; Kavalier, Fred; Golding, Charlotte; Lashwood, Alison; Robertson, Dene; Ruddy, Deborah; Whaite, Anna; Andrews, Thomasin; Bruno, Stefania; Golding, Charlotte; Henley, Susie; Novak, Marianne; O'Driscoll, Christine; Patel, Aakta; Rosser, Elisabeth; Tabrizi, Sarah; Taylor, Rachel; Warner, Thomas; Wild, Edward; Arran, Natalie; Craufurd, David; Fullam, Ruth; Howard, Liz; Huson, Susan; Partington-Jones, Lucy; Ritchie, Nichola; Snowden, Julie; Solom, Annie; Stopford, Cheryl; Thompson, Jennifer; Westmoreland, Leann; Nemeth, Andrea H; Siuda, Gill; Bandmann, Oliver; Bradbury, Alyson; Fillingham, Kay; Foustanos, Isabella; Quarrell, Oliver; Reynders, Hazel; Robertson, Lisa; Tidswell, Katharine

    2011-01-01

    Background: Huntington’s disease (HD) is a rare triplet repeat (CAG) disorder. Advanced, multi-centre, multi-national research frameworks are needed to study simultaneously multiple complementary aspects of HD. This includes the natural history of HD, its management and the collection of clinical information and biosamples for research. Methods: We report on cross-sectional data of the first 1766 participants in REGISTRY, the European Huntington’s Disease Network’s (EHDN), multi-lingual, multi-national prospective observational study of HD in Europe. Data collection (demographics, phenotype, genotype, medication, co-morbidities, biosamples) followed a standard protocol. Results: Phenotype, and the HD genotype, of manifest HD participants across different European regions was similar. Motor onset was most common (48%) with a non-motor onset in more than a third of participants. Motor signs increased, and cognitive abilities and functional capacity declined as the disease burden (CAGn-35.5) X age) increased. A life-time history of behavioural symptoms was common, but the behavioural score was not related to disease burden. One fifth of participants had severe psychiatric problems, e.g. suicidal ideation and attempts, and/or irritability/aggression, with psychosis being less common. Participants on anti-dyskinetic medication had a higher motor and lower cognitive score, were older, and more prone to physical trauma. A higher motor and a lower cognitive score predicted more advanced disease. Conclusions: The unparalleled collection of clinical data and biomaterials within the EHDN’s REGISTRY can expedite the search for disease modifiers (genetic and environmental) of age at onset and disease progression that could be harnessed for the development of novel treatments. PMID:20890398

  8. Dispelling myths about rare disease registry system development

    PubMed Central

    2013-01-01

    Rare disease registries (RDRs) are an essential tool to improve knowledge and monitor interventions for rare diseases. If designed appropriately, patient and disease related information captured within them can become the cornerstone for effective diagnosis and new therapies. Surprisingly however, registries possess a diverse range of functionality, operate in different, often-times incompatible, software environments and serve various, and sometimes incongruous, purposes. Given the ambitious goals of the International Rare Diseases Research Consortium (IRDiRC) by 2020 and beyond, RDRs must be designed with the agility to evolve and efficiently interoperate in an ever changing rare disease landscape, as well as to cater for rapid changes in Information Communication Technologies. In this paper, we contend that RDR requirements will also evolve in response to a number of factors such as changing disease definitions and diagnostic criteria, the requirement to integrate patient/disease information from advances in either biotechnology and/or phenotypying approaches, as well as the need to adapt dynamically to security and privacy concerns. We dispel a number of myths in RDR development, outline key criteria for robust and sustainable RDR implementation and introduce the concept of a RDR Checklist to guide future RDR development. PMID:24131574

  9. A report of the Malaysian dialysis registry of the National Renal Registry, Malaysia.

    PubMed

    Lim, Y N; Lim, T O; Lee, D G; Wong, H S; Ong, L M; Shaariah, W; Rozina, G; Morad, Z

    2008-09-01

    The Malaysian National Renal Registry was set up in 1992 to collect data for patients on renal replacement therapy (RRT). We present here the report of the Malaysian dialysis registry. The objectives of this papar are: (1) To examine the overall provision of dialysis treatment in Malaysia and its trend from 1980 to 2006. (2) To assess the treatment rate according to the states in the country. (3) To describe the method, location and funding of dialysis. (4) To characterise the patients accepted for dialysis treatment. (5) To analyze the outcomes of the dialysis treatment. Data on patients receiving dialysis treatment were collected at initiation of dialysis, at the time of any significant outcome, as well as yearly. The number of dialysis patients increased from 59 in 1980 to almost 15,000 in 2006. The dialysis acceptance rate increased from 3 per million population in 1980 to 116 per million population in 2006, and the prevalence rate from 4 to 550 per million population over the same period. The economically advantaged states of Malaysia had much higher dialysis treatment rates compared to the less economically advanced states. Eighty to 90% of new dialysis patients were accepted into centre haemodialysis (HD), and the rest into the chronic ambulatory peritoneal dialysis (CAPD) programme. The government provided about half of the funding for dialysis treatment. Patients older than 55 years accounted for the largest proportion of new patients on dialysis since the 1990s. Diabetes mellitus has been the main cause of ESRD and accounted for more than 50% of new ESRD since 2002. Annual death rate averaged about 10% on HD and 15% on CAPD. The unadjusted 5-year patient survival on both HD and CAPD was about 80%. Fifty percent of dialysis patients reported very good median QoL index score. About 70% of dialysis patients were about to work full or part time. There has been a very rapid growth of dialysis provision in Malaysia particularly in the older age groups. ESRD

  10. 75 FR 38145 - Announcing the New National Electronic Job Registry for Use in the H-2A Temporary Agricultural...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-07-01

    ... Employment and Training Administration Announcing the New National Electronic Job Registry for Use in the H... that the National Electronic Job Registry (job registry) in which H-2A job orders will be posted and... the job registry, please contact the iCERT System Team, Office of Foreign Labor ] Certification...

  11. 36 CFR 704.1 - Films selected for inclusion in the National Film Registry.

    Code of Federal Regulations, 2013 CFR

    2013-07-01

    ... 36 Parks, Forests, and Public Property 3 2013-07-01 2012-07-01 true Films selected for inclusion in the National Film Registry. 704.1 Section 704.1 Parks, Forests, and Public Property LIBRARY OF CONGRESS NATIONAL FILM REGISTRY OF THE LIBRARY OF CONGRESS § 704.1 Films selected for inclusion in...

  12. 36 CFR 704.1 - Films selected for inclusion in the National Film Registry.

    Code of Federal Regulations, 2012 CFR

    2012-07-01

    ... 36 Parks, Forests, and Public Property 3 2012-07-01 2012-07-01 false Films selected for inclusion in the National Film Registry. 704.1 Section 704.1 Parks, Forests, and Public Property LIBRARY OF CONGRESS NATIONAL FILM REGISTRY OF THE LIBRARY OF CONGRESS § 704.1 Films selected for inclusion in...

  13. 36 CFR 704.1 - Films selected for inclusion in the National Film Registry.

    Code of Federal Regulations, 2011 CFR

    2011-07-01

    ... 36 Parks, Forests, and Public Property 3 2011-07-01 2011-07-01 false Films selected for inclusion in the National Film Registry. 704.1 Section 704.1 Parks, Forests, and Public Property LIBRARY OF CONGRESS NATIONAL FILM REGISTRY OF THE LIBRARY OF CONGRESS § 704.1 Films selected for inclusion in...

  14. 36 CFR 704.1 - Films selected for inclusion in the National Film Registry.

    Code of Federal Regulations, 2014 CFR

    2014-07-01

    ... 36 Parks, Forests, and Public Property 3 2014-07-01 2014-07-01 false Films selected for inclusion in the National Film Registry. 704.1 Section 704.1 Parks, Forests, and Public Property LIBRARY OF CONGRESS NATIONAL FILM REGISTRY OF THE LIBRARY OF CONGRESS § 704.1 Films selected for inclusion in...

  15. 36 CFR 704.1 - Films selected for inclusion in the National Film Registry.

    Code of Federal Regulations, 2010 CFR

    2010-07-01

    ... 36 Parks, Forests, and Public Property 3 2010-07-01 2010-07-01 false Films selected for inclusion in the National Film Registry. 704.1 Section 704.1 Parks, Forests, and Public Property LIBRARY OF CONGRESS NATIONAL FILM REGISTRY OF THE LIBRARY OF CONGRESS § 704.1 Films selected for inclusion in...

  16. 16 CFR 310.8 - Fee for access to the National Do Not Call Registry.

    Code of Federal Regulations, 2010 CFR

    2010-01-01

    ... Registry under this Rule, 47 CFR 64.1200, or any other Federal regulation or law. Any person accessing the... 16 Commercial Practices 1 2010-01-01 2010-01-01 false Fee for access to the National Do Not Call... OF CONGRESS TELEMARKETING SALES RULE § 310.8 Fee for access to the National Do Not Call Registry....

  17. The Danish National Patient Registry: a review of content, data quality, and research potential

    PubMed Central

    Schmidt, Morten; Schmidt, Sigrun Alba Johannesdottir; Sandegaard, Jakob Lynge; Ehrenstein, Vera; Pedersen, Lars; Sørensen, Henrik Toft

    2015-01-01

    Background The Danish National Patient Registry (DNPR) is one of the world’s oldest nationwide hospital registries and is used extensively for research. Many studies have validated algorithms for identifying health events in the DNPR, but the reports are fragmented and no overview exists. Objectives To review the content, data quality, and research potential of the DNPR. Methods We examined the setting, history, aims, content, and classification systems of the DNPR. We searched PubMed and the Danish Medical Journal to create a bibliography of validation studies. We included also studies that were referenced in retrieved papers or known to us beforehand. Methodological considerations related to DNPR data were reviewed. Results During 1977–2012, the DNPR registered 8,085,603 persons, accounting for 7,268,857 inpatient, 5,953,405 outpatient, and 5,097,300 emergency department contacts. The DNPR provides nationwide longitudinal registration of detailed administrative and clinical data. It has recorded information on all patients discharged from Danish nonpsychiatric hospitals since 1977 and on psychiatric inpatients and emergency department and outpatient specialty clinic contacts since 1995. For each patient contact, one primary and optional secondary diagnoses are recorded according to the International Classification of Diseases. The DNPR provides a data source to identify diseases, examinations, certain in-hospital medical treatments, and surgical procedures. Long-term temporal trends in hospitalization and treatment rates can be studied. The positive predictive values of diseases and treatments vary widely (<15%–100%). The DNPR data are linkable at the patient level with data from other Danish administrative registries, clinical registries, randomized controlled trials, population surveys, and epidemiologic field studies – enabling researchers to reconstruct individual life and health trajectories for an entire population. Conclusion The DNPR is a valuable

  18. Practice-Based Evidence to Evidence-Based Practice: Building the National Radiation Oncology Registry

    PubMed Central

    Efstathiou, Jason A.; Nassif, Deborah S.; McNutt, Todd R.; Bogardus, C. Bob; Bosch, Walter; Carlin, Jeffrey; Chen, Ronald C.; Chou, Henry; Eggert, Dave; Fraass, Benedick A.; Goldwein, Joel; Hoffman, Karen E.; Hotz, Ken; Hunt, Margie; Kessler, Marc; Lawton, Colleen A.F.; Mayo, Charles; Michalski, Jeff M.; Mutic, Sasa; Potters, Louis; Rose, Christopher M.; Sandler, Howard M.; Sharp, Gregory; Tomé, Wolfgang; Tran, Phuoc T.; Wall, Terry; Zietman, Anthony L.; Gabriel, Peter E.; Bekelman, Justin E.

    2013-01-01

    The National Radiation Oncology Registry (NROR), sponsored by the Radiation Oncology Institute and the American Society for Radiation Oncology, is designed to collect standardized information on cancer care delivery among patients treated with radiotherapy in the United States and will focus on patients with prostate cancer. Stakeholders were engaged through a forum that emphasized the need for patient-centered outcomes, minimal data burden, and maximal connectivity to existing registries and databases. An electronic infrastructure is under development to provide connectivity across radiation oncology and hospital information systems. The NROR Gateway features automatic abstraction as well as aggregation of treatment and outcome data. The prostate cancer data dictionary provides standardized elements in four domains: facility, physician, patient, and treatment. The pilot phase will consist of clinical centers chosen to provide a representative mix of radiation treatment modalities, facility types, population-based settings, and regional locations. The initial set of radiation practice metrics includes physician board certification and maintenance, ordering of staging scans, active surveillance discussion, dose prescriptions for low-risk/high-risk disease, radiation fields for low-risk/high-risk disease, image-guided radiation therapy use, androgen deprivation therapy use, post-brachytherapy implant computed tomography dosimetry, collection of toxicity assessments, and longitudinal patient follow-up. The NROR pilot study will provide the framework for expansion to a nationwide electronic registry for radiation oncology. PMID:23942508

  19. Use of Evidence-Based Therapies in and Short-term Outcomes of STEMI and NSTEMI in Patients with Chronic Kidney Disease: A Report from the National Cardiovascular Data ACTION Registry

    PubMed Central

    Fox, Caroline S.; Muntner, Paul; Chen, Anita Y.; Alexander, Karen P.; Roe, Matthew T.; Cannon, Christopher P.; Saucedo, Jorge F; Kontos, Michael C.; Wiviott, Stephen D.

    2010-01-01

    Background Chronic kidney disease (CKD) is a risk factor for myocardial infarction (MI) and death. Our goal was to characterize the association between CKD severity and short-term outcomes and the use of in-hospital evidence-based therapies among patients with STEMI and NSTEMI. Methods and Results The study sample was drawn from the ACTION Registry, a nation-wide sample of STEMI (n=19,029) and NSTEMI (n=30,462) patients. Estimated glomerular filtration rate (eGFR) was calculated using the Modification of Diet in Renal Disease (MDRD) equation in relation to use of acute (first 24 hours) therapies and early (first 48 hours) cardiac catheterization as well as in-hospital major bleeding events and death. Overall, 30.5% and 42.9% of patients with STEMI and NSTEMI, respectively, had CKD. Regardless of MI type, patients with progressively more severe CKD had higher rates of death. For STEMI, the odds ratio for Stage 3a, 3b, 4, and 5 CKD compared to patients with no CKD was 2.49, 3.72, 4.82, and 7.97 (p-value for trend<0.0001). For NSTEMI, the analogous odds ratios were 1.81, 2.41, 3.50, and 4.09 (p-value for trend<0.0001). In addition, patients with progressively more severe CKD were less likely to receive acute evidence-based therapies including aspirin, beta-blockers or clopidogrel, undergo any reperfusion (STEMI) or revascularization (NSTEMI), and had higher rates of bleeding. Conclusions Reports over the past decade have highlighted the importance of CKD among patients with MI. Data from this contemporary cohort suggest patients with CKD still receive fewer evidence-based therapies and have substantially higher mortality rates. PMID:20065168

  20. Development of a disease registry for autoimmune bullous diseases: initial analysis of the pemphigus vulgaris subset.

    PubMed

    Shah, Amit Aakash; Seiffert-Sinha, Kristina; Sirois, David; Werth, Victoria P; Rengarajan, Badri; Zrnchik, William; Attwood, Kristopher; Sinha, Animesh A

    2015-01-01

    Pemphigus vulgaris (PV) is a rare, potentially life threatening, autoimmune blistering skin disease. The International Pemphigus and Pemphigoid Foundation (IPPF) has recently developed a disease registry with the aim to enhance our understanding of autoimmune bullous diseases with the long-term goal of acquiring information to improve patient care. Patients were recruited to the IPPF disease registry through direct mail, e-mail, advertisements, and articles in the IPPF-quarterly, -website, -Facebook webpage, and IPPF Peer Health Coaches to complete a 38-question survey. We present here the initial analysis of detailed clinical information collected on 393 PV patients. We report previously unrecognized gender differences in terms of lesion location, autoimmune comorbidity, and delay in diagnosis. The IPPF disease registry serves as a useful resource and guide for future clinical investigation. PMID:24691863

  1. Surveillance of the Incidence of Non-Communicable Diseases (NCDs) with Sparse Resources: A Simulation Study Using Data from a National Diabetes Registry, Denmark, 1995–2004

    PubMed Central

    Brinks, Ralph; Hoyer, Annika; Landwehr, Sandra

    2016-01-01

    We propose two new methods to estimate secular trends in the incidence of a chronic disease from a series of prevalence studies and mortality data. One method is a direct inversion formula, the second method is a least squares estimation. Both methods are validated in a simulation study based on data from a diabetes register. The results of the validation show that the proposed methods may be useful in epidemiological settings with sparse resources, where running a register or a series of follow-up studies is difficult or impossible. PMID:27023438

  2. The NIH Office of Rare Diseases Research Patient Registry Standard: A Report from the University of New Mexico’s Oculopharyngeal Muscular Dystrophy Patient Registry

    PubMed Central

    Daneshvari, Shamsi; Youssof, Sarah; Kroth, Philip J.

    2013-01-01

    Patient registries remove barriers to performing research by assembling patient cohorts and data in a systematic, efficient, and proactive manner. Consequently, registries are a valuable strategy for facilitating research and scientific discovery. Registries for rare diseases are arguably even more valuable since there is difficulty in assembling cohorts of adequate size for study. Recently, the NIH Office of Rare Diseases Research created a rare disease registry Standard to facilitate research across multiple registries. We implemented the Standard for the Oculopharyngeal Muscular Dystrophy patient registry created at the University of New Mexico Health Sciences Center. We performed a data element analysis for each Common Data Element defined in the Standard. Problems included the use of previous HL7 versions, non-structured data types, and a recent update to the Standard. Overall, the Standard is an excellent first step toward standardizing patient registries to facilitate work on broader questions and promote novel interdisciplinary collaborations. PMID:24551336

  3. Recurrent and de novo disease after renal transplantation: a report from the Renal Allograft Disease Registry.

    PubMed

    Hariharan, Sundaram; Savin, Virginia J

    2004-08-01

    Recurrent and de novo disease is an increasing problem and is known to negatively impact transplant graft survival. Immunosuppressive medications have not had an impact on the prevalence of recurrent and de novo disease. Renal Allograft Disease Registry (RADR) was established to study the prevalence, impact and risk factors for the development of recurrent and de novo disease. Retrospective and prospective study on recurrent disease is discussed in this manuscript. PMID:15265160

  4. Comparative study on National Burn Registry in America, England, Australia and Iran

    PubMed Central

    Ajami, Sima; Lamoochi, Parisa

    2014-01-01

    Context: Iran experiences a high rate of burns accompanied by painful consequences, death and a lot of disabilities. In order to reduce the burden of this injury, some strategies such as designing and implementation of registration systems are essential. Aims: The aim of this study was to compare National Burn Registry in America, England, Australia and Iran. Materials and Methods: This study was comparative-descriptive in which data collected from the National Burn Registry of America, England, Australia and Iran studied in 2013. The study population included National Burn Registry of these countries and data was collected using raw data forms. Statistical Analysis Used: Data on each country was categorized according to objectives and comparisons took place using comparative tables. Finally, descriptive-theoretical analysis of the findings was performed. Results: National Security Agency and National Burn Repository in America, National Institute of Health and the Ministry of Health in England and the Department of Health and Senior in Australia are responsible for national burning registry. A seven-axial model was proposed for Iran's National Registry. America's registry system is broader than other countries due to its cooperation with Canada, Sweden and Asia. Conclusion: The aim of the Burn Registry System is to gather, store, edit, categorize, analyze and distribute all burns, injured data from all health care centers in a specific population and provide valuable information about the occurrence, time and regional distribution of burn injury. PMID:25540779

  5. National Registry on Cardiac Electrophysiology 2007 and 2008.

    PubMed

    da Silva, Manuel Nogueira; Bonhorst, Daniel; de Sousa, João

    2009-11-01

    Clinical electrophysiology remains one of the most dynamic areas of cardiology, with continuing developments in equipping centers with more modern mapping and navigation systems. This has enabled an increase in the number and variety of interventions, resulting in significant improvements in results of therapeutic ablation of arrhythmias and prevention of sudden cardiac death. In this phase of transition towards implementation of a computerized national registry with nationwide data transmitted via the internet, publication of the registry in its previous form, although requiring more work, still seems justified, in order to appraise and disseminate qualitative and quantitative developments in this activity and enable comparisons with what is being done internationally, assess the centers' training capacity and inform national and European health authorities of the activities and real needs in this sector. The authors analyze the number and type of procedures performed during 2007 and 2008 based on a survey sent to centers performing diagnostic and interventional electrophysiology (16 centers in 2007 and 2008) and/or implanting cardioverter-defibrillators (ICDs) (19 centers in 2007 and 21 in 2008). Compared to 2006, one more center began interventional electrophysiology in 2007 and two centers began implanting ICDs in 2008. In the years under review, 2060 electrophysiological studies were performed in 2007 and 2007 were performed in 2008, of which 74 and 79.5% respectively were followed by therapeutic ablation, making totals of 1523 and 1596 ablations (increases of 10.7 and 4.6% from previous years). Atrioventricular nodal reentrant tachycardia was the main indication for ablation (28.4 and 28.7%), followed by accessory pathways (26.8 and 25.4%), atrial flutter (20.8 and 19.7%), atrial fibrillation (13.9 and 14.6%), ventricular tachycardia (4.7 and 5.1%), atrial tachycardia (2.8 and 2.6%) and atrioventricular junction ablation (2.7 and 3.9%). Regarding ICDs, a

  6. THE RARE DISEASES CLINICAL RESEARCH NETWORK CONTACT REGISTRY UPDATE: FEATURES AND FUNCTIONALITY

    PubMed Central

    Richesson, Rachel; Sutphen, Rebecca; Shereff, Denise; Krischer, Jeff

    2013-01-01

    The Rare Diseases Clinical Research Network (RDCRN) Contact Registry has grown in size and scope since it was first reported in this journal in 2007. In this paper, we reflect on our seven years’ experience developing and expanding the RDCRN Contact Registry to include many more rare diseases. We present the functional and data requirements that motivated this registry, and the new features and policies that have been developed since. Given the high costs and long-term commitment required to build patient registries, the RDCRN Contact Registry experience represents a reasonable approach for identifying and cultivating potential research populations, with minimal resources and patient burden. The basic model of a patient-reported registry has not changed since our 2007 report, but the number of diseases has grown from 42 to 201, and the types of information that are exchanged with participants has expanded. A patient-directed information-sharing feature has been added to reduce barriers to communication between investigators and patients affected by rare and genetic diseases. As specific data and research needs arise, the Contact Registry can be leveraged to access needed data or to solicit patients for particular research opportunities. This multiple-disease registry is scalable, expandable, and standards-driven, and has become a model for clinical and translational research across rare and many other diseases. PMID:22405970

  7. Electronic health records and disease registries to support integrated care in a health neighbourhood: an ontology-based methodology

    PubMed Central

    Liaw, Siaw-Teng; Taggart, Jane; Yu, Hairong; Rahimi, Alireza

    2014-01-01

    Disease registries derived from Electronic Health Records (EHRs) are widely used for chronic disease management (CDM). However, unlike national registries which are specialised data collections, they are usually specific to an EHR or organization such as a medical home. We approached registries from the perspective of integrated care in a health neighbourhood, considering data quality issues such as semantic interoperability (consistency), accuracy, completeness and duplication. Our proposition is that a realist ontological approach is required to systematically and accurately identify patients in an EHR or data repository of EHRs, assess intrinsic data quality and fitness for use by members of the multidisciplinary integrated care team. We report on this approach as applied to routinely collected data in an electronic practice based research network in Australia. PMID:25954577

  8. 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. PMID:21835664

  9. 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

  10. Complete ascertainment of Parkinson disease in the Swedish Twin Registry

    PubMed Central

    Wirdefeldt, Karin; Gatz, Margaret; Bakaysa, Stephanie L.; Fiske, Amy; Flensburg, Måns; Petzinger, Giselle M.; Widner, Håkan; Lew, Mark F.; Welsh, Mickie; Pedersen, Nancy L.

    2008-01-01

    This report describes the ascertainment of Parkinson disease (PD) in all individuals aged 50 years or older (49,814 individuals) from the Swedish Twin Registry. In phase one of the study, all twins were screened for PD using telephone interviews, with a response rate of 72.7%. In phase two, twins with suspected PD were re-contacted to exclude anyone from follow-up who reported parkinsonian symptoms due to diseases other than PD. In the third phase, in-person clinical evaluations were completed for twins who were still considered PD suspects after phase two and for a sample of co-twins. During the clinical evaluations, we also collected blood samples and information about a variety of environmental exposures. Overall prevalence rate for PD was 496 per 100,000 individuals. Among the 132 PD cases identified, there were only three concordant twin pairs. In total 7.2% of PD cases reported a first degree relative with PD. PMID:17532098

  11. The importance of national registries/databases in metabolic surgery: the UK experience.

    PubMed

    Hopkins, James; Welbourn, Richard

    2016-07-01

    The United Kingdom (UK) National Bariatric Surgery Registry (NBSR) is a registry of self-reported bariatric surgery from members of the British Obesity and Metabolic Surgery Society. We describe the registry and its usefulness and limitations in improving the knowledge base for metabolic and bariatric surgery, reviewing the main results for the first 5 years of its introduction since 2009. We also review the reports of other national and international bariatric surgery registries and compare the baseline characteristics, including metabolic parameters, of the patients entered into the NBSR. A total of 161 surgeons from 137 UK bariatric surgery units entered 32,212 anonymized patient records. Of these patients, 76% were female, mean weight at preoperative clinic was 135.6 kg, body mass index was 48.8 kg/m(2), and 76.5 % had publicly funded National Health Service treatment. The 3 most common procedures were gastric bypass (55.3%), gastric banding (20.4%), and sleeve gastrectomy (20.2%), although the prevalence of these changed over time and was different between public and private sectors. The 2-year rate for diabetes improvement was 61.5%, but this varied with the duration of diabetes and baseline diabetic therapy. The data were similar to those from other large registries. Establishment of large national registries such as the NBSR has the potential to provide "real-world" information for quality assurance and the effect of metabolic and bariatric surgery on the whole operated population. PMID:27313193

  12. Developing a Communitywide Electronic Health Record Disease Registry in Primary Care Practices: Lessons Learned from the Western New York Beacon Community

    PubMed Central

    Heider, Arvela R.; Maloney, Nancy A.; Satchidanand, Nikhil; Allen, Geoffrey M.; Mueller, Raymond; Gangloff, Steven; Singh, Ranjit

    2014-01-01

    Background and Introduction: Disease registries, as part of electronic health records (EHRs), have shown promise in improving care and outcomes. However, little is known about how best to implement them across communities, especially in communities that are not highly integrated. The Western New York (WNY) primary care community consists largely of independent practices using at least 20 different EHR products. This paper discusses the processes undertaken to develop a communitywide EHR disease registry in WNY, improvements it engendered, barriers overcome, and the lessons learned. Methods: HEALTHeLINK, under the Office of the National Coordinator for Health Information Technology Beacon Community Initiative, reached out to 98 primary care practices in the WNY region to establish EHR-based diabetes registries. Working with practices, community partners, and vendors, registry specifications were created. The registry was piloted with practices using one local vendor’s EHR product and then rolled out to other practices, including five other EHR products. Using identified and de-identified registry datasets, quality benchmarking within and between practices and population health management were undertaken. Findings: From 2011 to 2013, the WNY Beacon Community assisted 98 practices (344 providers) serving over 50,000 adult diabetic patients. A major focus was on EHR registry development across diverse systems, and overcoming the challenges this presented. The Beacon diabetes registry was implemented at 85 of the 98 targeted practices. Of these registries, 65 met the criteria described in a later section for quality benchmarking and population health management purposes. Practices received quarterly benchmark reports summarizing their performance on key diabetes quality metrics and were compared to community practice averages. Practices used their registries for population health management by identifying and targeting patients in need of follow-up or specific

  13. Integration of site-specific health information: Agency for Toxic Substances and Disease Registry health assessments

    SciTech Connect

    Lesperance, A.M.; Siegel, M.R.

    1990-12-01

    The Agency for Toxic Substances and Disease Registry is required to conduct a health assessment of any site that is listed on or proposed for the US Environmental Protection Agency's National Priorities List. Sixteen US Department of Energy (DOE) sites currently fall into this category. Health assessments contain a qualitative description of impacts to public health and the environment from hazardous waste sites, as well as recommendations for actions to mitigate or eliminate risk. Because these recommendations may have major impacts on compliance activities at DOE facilities, the health assessments are an important source of information for the monitoring activities of DOE's Office of Environmental Compliance (OEC). This report provides an overview of the activities involved in preparing the health assessment, its role in environmental management, and its key elements.

  14. Connecting the Dots: Linking the National Program of Cancer Registries and the Needs of Survivors and Clinicians.

    PubMed

    Ryerson, A Blythe; Eheman, Christie; Styles, Timothy; Rycroft, Randi; Snyder, Claire

    2015-12-01

    Cancer survivors, the medical community, public health professionals, researchers, and policymakers all need information about newly diagnosed cancer cases and deaths to better understand and address the disease burden. CDC collects cancer data on 96% of the U.S. population through the National Program of Cancer Registries. The National Program of Cancer Registries routinely collects data on all cancer occurrences, deaths, and the types of initial treatment received by the patients, and recently CDC has made advances in its cancer surveillance activities that have direct applicability to cancer survivorship research and care. This article examines CDC's innovative uses of the National Program of Cancer Registries infrastructure and data as a recruitment source for survivorship research studies and behavioral interventions; comparative effectiveness and patient-centered outcomes research; and the collection, consolidation, and dissemination of treatment summaries for cancer survivors and their providers. This paper also discusses long-term, idealistic plans for additional data linkages and sharing among public health, providers, and the cancer survivor through innovative concepts such as patient portals and rapid-learning health care. PMID:26590648

  15. National kidney dialysis and transplant registries in Latin America: how to implement and improve them.

    PubMed

    González-Bedat, María Carlota; Rosa-Diez, Guillermo Javier; Fernández-Cean, Juan Manuel; Ordúñez, Pedro; Ferreiro, Alejandro; Douthat, Walter

    2015-09-01

    The Strategic Plan of the Pan American Health Organization, 2014-2019, Championing Health: Sustainable Development and Equityrecognizes that "Chronic kidney disease, caused mainly by complications of diabetes and hypertension, has increased in the Region." This Plan includes the first concrete goal on chronic kidney disease: to achieve a prevalence rate for renal replacement therapy of at least 700 patients per million population by 2019. National dialysis and transplant registries (DTR) are a useful tool for epidemiological research, health care planning, and quality improvement. Their success depends on the quality of their data and quality control procedures. This article describes the current situation of national DTRs in the Region and the content of their information and health indicators, and it offers recommendations for creating and maintaining them. It points to their heterogeneity or absence in some countries, in line with the inequities that patients face in access to renal replacement therapy. The complete lack of information in Caribbean countries prevents their inclusion in this communication, which requires immediate attention. PMID:26758005

  16. Exploring Clinical and Epidemiological Characteristics of Interstitial Lung Diseases: Rationale, Aims, and Design of a Nationwide Prospective Registry--The EXCITING-ILD Registry.

    PubMed

    Kreuter, Michael; Herth, Felix J F; Wacker, Margarethe; Leidl, Reiner; Hellmann, Andreas; Pfeifer, Michael; Behr, Jürgen; Witt, Sabine; Kauschka, Dagmar; Mall, Marcus; Günther, Andreas; Markart, Philipp

    2015-01-01

    Despite a number of prospective registries conducted in past years, the current epidemiology of interstitial lung diseases (ILD) is still not well defined, particularly regarding the prevalence and incidence, their management, healthcare utilisation needs, and healthcare-associated costs. To address these issues in Germany, a new prospective ILD registry, "Exploring Clinical and Epidemiological Characteristics of Interstitial Lung Diseases" (EXCITING-ILD), is being conducted by the German Centre for Lung Research in association with ambulatory, inpatient, scientific pulmonology organisations and patient support groups. This multicentre, noninterventional, prospective, and observational ILD registry aims to collect comprehensive and validated data from all healthcare institutions on the incidence, prevalence, characteristics, management, and outcomes regarding all ILD presentations in the real-world setting. Specifically, this registry will collect demographic data, disease-related data such as ILD subtype, treatments, diagnostic procedures (e.g., HRCT, surgical lung biopsy), risk factors (e.g., familial ILD), significant comorbidities, ILD managements, and disease outcomes as well as healthcare resource consumption. The EXCITING-ILD registry will include in-patient and out-patient ILD healthcare facilities in more than 100 sites. In summary, this registry will document comprehensive and current epidemiological data as well as important health economic data for ILDs in Germany. PMID:26640781

  17. 49 CFR 390.111 - Requirements for continued listing on the National Registry of Certified Medical Examiners.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... 49 Transportation 5 2013-10-01 2013-10-01 false Requirements for continued listing on the National Registry of Certified Medical Examiners. 390.111 Section 390.111 Transportation Other Regulations Relating... National Registry of Certified Medical Examiners § 390.111 Requirements for continued listing on...

  18. A population-based registry as a source of health indicators for rare diseases: the ten-year experience of the Veneto Region’s rare diseases registry

    PubMed Central

    2014-01-01

    Background Although rare diseases have become a major public health issue, there is a paucity of population-based data on rare diseases. The aim of this epidemiological study was to provide descriptive figures referring to a sizable group of unrelated rare diseases. Methods Data from the rare diseases registry established in the Veneto Region of north-east Italy (population 4,900,000), referring to the years from 2002 to 2012, were analyzed. The registry is based on a web-based system accessed by different users. Cases are enrolled by two different sources: clinicians working at Centers of expertise officially designated to diagnose and care patients with rare diseases and health professionals working in the local health districts. Deaths of patients are monitored by Death Registry. Results So far, 19,547 patients with rare diseases have been registered, and 23% of them are pediatric cases. The overall raw prevalence of the rare diseases monitored in the population under study is 33.09 per 10,000 inhabitants (95% CI 32.56-33.62), whilst the overall incidence is 3.85 per 10,000 inhabitants (95% CI 3.67-4.03). The most commonly-recorded diagnoses belong to the following nosological groups: congenital malformations (Prevalence: 5.45/10,000), hematological diseases (4.83/10,000), ocular disorders (4.47/10,000), diseases of the nervous system (3.51/10,000), and metabolic disorders (2,95/10,000). Most of the deaths in the study population occur among pediatric patients with congenital malformations, and among adult cases with neurological diseases. Rare diseases of the central nervous system carry the highest fatality rate (71.36/1,000). Rare diseases explain 4.2% of general population Years of Life Lost (YLLs), comparing to 1.2% attributable to infectious diseases and 2.6% to diabetes mellitus. Conclusions Our estimates of the burden of rare diseases at population level confirm that these conditions are a relevant public health issue. Our snapshot of their epidemiology

  19. 49 CFR 191.22 - National Registry of Pipeline and LNG operators.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... 49 Transportation 3 2012-10-01 2012-10-01 false National Registry of Pipeline and LNG operators. 191.22 Section 191.22 Transportation Other Regulations Relating to Transportation (Continued) PIPELINE AND HAZARDOUS MATERIALS SAFETY ADMINISTRATION, DEPARTMENT OF TRANSPORTATION (CONTINUED)...

  20. 49 CFR 195.64 - National Registry of Pipeline and LNG Operators.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... 49 Transportation 3 2014-10-01 2014-10-01 false National Registry of Pipeline and LNG Operators. 195.64 Section 195.64 Transportation Other Regulations Relating to Transportation (Continued) PIPELINE AND HAZARDOUS MATERIALS SAFETY ADMINISTRATION, DEPARTMENT OF TRANSPORTATION (CONTINUED)...

  1. 49 CFR 195.64 - National Registry of Pipeline and LNG Operators.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... 49 Transportation 3 2013-10-01 2013-10-01 false National Registry of Pipeline and LNG Operators. 195.64 Section 195.64 Transportation Other Regulations Relating to Transportation (Continued) PIPELINE AND HAZARDOUS MATERIALS SAFETY ADMINISTRATION, DEPARTMENT OF TRANSPORTATION (CONTINUED)...

  2. 49 CFR 191.22 - National Registry of Pipeline and LNG operators.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... 49 Transportation 3 2014-10-01 2014-10-01 false National Registry of Pipeline and LNG operators. 191.22 Section 191.22 Transportation Other Regulations Relating to Transportation (Continued) PIPELINE AND HAZARDOUS MATERIALS SAFETY ADMINISTRATION, DEPARTMENT OF TRANSPORTATION (CONTINUED)...

  3. 49 CFR 195.64 - National Registry of Pipeline and LNG Operators.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... 49 Transportation 3 2012-10-01 2012-10-01 false National Registry of Pipeline and LNG Operators. 195.64 Section 195.64 Transportation Other Regulations Relating to Transportation (Continued) PIPELINE AND HAZARDOUS MATERIALS SAFETY ADMINISTRATION, DEPARTMENT OF TRANSPORTATION (CONTINUED)...

  4. 49 CFR 191.22 - National Registry of Pipeline and LNG operators.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... 49 Transportation 3 2013-10-01 2013-10-01 false National Registry of Pipeline and LNG operators. 191.22 Section 191.22 Transportation Other Regulations Relating to Transportation (Continued) PIPELINE AND HAZARDOUS MATERIALS SAFETY ADMINISTRATION, DEPARTMENT OF TRANSPORTATION (CONTINUED)...

  5. 49 CFR 191.22 - National Registry of Pipeline and LNG operators.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ... 49 Transportation 3 2011-10-01 2011-10-01 false National Registry of Pipeline and LNG operators. 191.22 Section 191.22 Transportation Other Regulations Relating to Transportation (Continued) PIPELINE AND HAZARDOUS MATERIALS SAFETY ADMINISTRATION, DEPARTMENT OF TRANSPORTATION (CONTINUED)...

  6. 49 CFR 195.64 - National Registry of Pipeline and LNG Operators.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ... 49 Transportation 3 2011-10-01 2011-10-01 false National Registry of Pipeline and LNG Operators. 195.64 Section 195.64 Transportation Other Regulations Relating to Transportation (Continued) PIPELINE AND HAZARDOUS MATERIALS SAFETY ADMINISTRATION, DEPARTMENT OF TRANSPORTATION (CONTINUED)...

  7. The National Anesthesia Clinical Outcomes Registry: A Sustainable Model for the Information Age?

    PubMed Central

    Dutton, Richard P.

    2014-01-01

    Anesthesiologists care for patients of all ages, with all conceivable comorbidities, in every kind of health care facility. This leads to a significant challenge in the collection of data to describe the specialty, and in the development of evidence-based performance measures for anesthesiologists. Whereas narrowly defined medical specialties have developed registries based on manual abstraction of clinical data from the medical record (e.g., cardiac surgery), this approach would be prohibitively expensive for anesthesiology, and is unlikely to generate statistically useful data when major adverse outcomes occur a handful of times in tens of thousands of cases. The American Society of Anesthesiologists (ASA) addressed this challenge in 2008 by funding a related organization, the Anesthesia Quality Institute (AQI), to develop the National Anesthesia Clinical Outcomes Registry (NACOR). The technical development of this registry and the approach taken to define the specialty of anesthesiology and the performance of anesthesiologists may serve as a model for other specialty society efforts. PMID:25848607

  8. Evaluation of participant recruitment methods to a rare disease online registry.

    PubMed

    Johnson, Kimberly J; Mueller, Nancy L; Williams, Katherine; Gutmann, David H

    2014-07-01

    Internet communication advances provide new opportunities to assemble individuals with rare diseases to online patient registries from wide geographic areas for research. However, there is little published information on the efficacy of different recruitment methods. Here we describe recruitment patterns and the characteristics of individuals with the self-identified autosomal dominant genetic disorder neurofibromatosis type 1 (NF1) who participated in an online patient registry during the 1-year period from 1/1/2012 to 12/31/2012. We employed four main mechanisms to alert potential participants to the registry: (1) Facebook and Google advertising, (2) government and academic websites, (3) patient advocacy groups, and (4) healthcare providers. Participants reported how they first heard about the registry through an online questionnaire. During the 1-year period, 880 individuals participated in the registry from all 50 U.S. States, the District of Columbia, Puerto Rico, and 39 countries. Facebook and Google were reported as referral sources by the highest number of participants (n=550, 72% Facebook), followed by healthcare providers (n=74), and government and academic websites (n=71). The mean participant age was 29±18 years and most participants reported White race (73%) and female sex (62%) irrespective of reported referral source. Internet advertising, especially through Facebook, resulted in efficient enrollment of large numbers of individuals with NF1. Our study demonstrates the potential utility of this approach to assemble individuals with a rare disease from across the world for research studies. PMID:24700441

  9. An i2b2-based, generalizable, open source, self-scaling chronic disease registry

    PubMed Central

    Quan, Justin; Ortiz, David M; Bousvaros, Athos; Ilowite, Norman T; Inman, Christi J; Marsolo, Keith; McMurry, Andrew J; Sandborg, Christy I; Schanberg, Laura E; Wallace, Carol A; Warren, Robert W; Weber, Griffin M; Mandl, Kenneth D

    2013-01-01

    Objective Registries are a well-established mechanism for obtaining high quality, disease-specific data, but are often highly project-specific in their design, implementation, and policies for data use. In contrast to the conventional model of centralized data contribution, warehousing, and control, we design a self-scaling registry technology for collaborative data sharing, based upon the widely adopted Integrating Biology & the Bedside (i2b2) data warehousing framework and the Shared Health Research Information Network (SHRINE) peer-to-peer networking software. Materials and methods Focusing our design around creation of a scalable solution for collaboration within multi-site disease registries, we leverage the i2b2 and SHRINE open source software to create a modular, ontology-based, federated infrastructure that provides research investigators full ownership and access to their contributed data while supporting permissioned yet robust data sharing. We accomplish these objectives via web services supporting peer-group overlays, group-aware data aggregation, and administrative functions. Results The 56-site Childhood Arthritis & Rheumatology Research Alliance (CARRA) Registry and 3-site Harvard Inflammatory Bowel Diseases Longitudinal Data Repository now utilize i2b2 self-scaling registry technology (i2b2-SSR). This platform, extensible to federation of multiple projects within and between research networks, encompasses >6000 subjects at sites throughout the USA. Discussion We utilize the i2b2-SSR platform to minimize technical barriers to collaboration while enabling fine-grained control over data sharing. Conclusions The implementation of i2b2-SSR for the multi-site, multi-stakeholder CARRA Registry has established a digital infrastructure for community-driven research data sharing in pediatric rheumatology in the USA. We envision i2b2-SSR as a scalable, reusable solution facilitating interdisciplinary research across diseases. PMID:22733975

  10. National joint registry data underestimates the burden of prosthetic joint infection

    PubMed Central

    Young, Simon; Zhu, Mark; Ravi, Saiprasad; Luey, Chris

    2016-01-01

    Objective: Joint registries are powerful tools for tracking outcomes following joint arthroplasty. However recent literature has exposed deficiencies in data accuracy when reporting re-operations for prosthetic joint infections (PJI), particularly when no components are changed. The aim of this study was to compare accuracy of data from the New Zealand Joint Registry (NZJR) to a multi-centre audit of hospital records to establish the rate of capture for PJI reoperations. Methods: We followed 4009 patients undergoing total knee or hip arthroplasty performed at the three tertiary referral hospitals from January 2006 to December 2008 for two years. The reoperation rate for PJIs was extracted from the NZJR. In addition, an audit of hospital records for the same patients was carried out to identify reoperations for PJI. The audit data was then compared to the NZJR data. Results: The NZJR reported a reoperation rate of 0.67% for PJI within two years of the primary arthroplasty compared to 1.1% from the audit of hospital records, giving the NZJR a sensitivity of 63%. Only 36% of washout only procedures and 58% of modular exchange procedures were captured. Surgeons were more likely to report PJIs to NZJR if they performed the primary procedure. Conclusion: National joint registry data significantly underestimates the rate of reoperation for PJI. Strategies for improving data accuracy may include revising the registry forms to include reoperation without change of components and frequent validation of national data with other databases.

  11. 78 FR 17213 - Agency for Toxic Substances and Disease Registry Availability of Final Toxicological Profile

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-03-20

    ... of the 275 priority substances was announced in the Federal Register on November 3rd, 2011 (76 FR... published in the Federal Register on April 27, 2011 (76 FR 23600), with notice of a 90-day public comment... HUMAN SERVICES Agency for Toxic Substances and Disease Registry Availability of Final...

  12. The Danish National Lymphoma Registry: Coverage and Data Quality

    PubMed Central

    Arboe, Bente; El-Galaly, Tarec Christoffer; Clausen, Michael Roost; Munksgaard, Peter Svenssen; Stoltenberg, Danny; Nygaard, Mette Kathrine; Klausen, Tobias Wirenfeldt; Christensen, Jacob Haaber; Gørløv, Jette Sønderskov; Brown, Peter de Nully

    2016-01-01

    Background The Danish National Lymphoma Register (LYFO) prospectively includes information on all lymphoma patients newly diagnosed at hematology departments in Denmark. The validity of the clinical information in the LYFO has never been systematically assessed. Aim To test the coverage and data quality of the LYFO. Methods The coverage was tested by merging data of the LYFO with the Danish Cancer Register and the Danish National Patient Register, respectively. The validity of the LYFO was assessed by crosschecking with information from medical records in subgroups of patients. A random sample of 3% (N = 364) was made from all patients in the LYFO. In addition, four subtypes of lymphomas were validated: CNS lymphomas, diffuse large B-cell lymphomas, peripheral T-cell lymphomas, and Hodgkin lymphomas. A total of 1,706 patients from the period 2000–2012 were included. The positive predictive values (PPVs) and completeness of selected variables were calculated for each subgroup and for the entire cohort of patients. Results The comparison of data from the LYFO with the Danish Cancer Register and the Danish National Patient Register revealed a high coverage. In addition, the data quality was good with high PPVs (87% to 100%), and high completeness (92% to 100%). Conclusion The LYFO is a unique, nationwide clinical database characterized by high validity, good coverage and prospective data entry. It represents a valuable resource for future lymphoma research. PMID:27336800

  13. Agency for Toxic Substances and Disease Registry Brownfields/ land-reuse site tool.

    PubMed

    Perlman, Gary D; Berman, Laurel; Leann, Kathryn; Bing, Lemley

    2012-12-01

    As part of our continuing effort to highlight innovative approaches to improving the health and environment of communities, the Journal is pleased to bring back the bimonthly column from the U.S. Agency for Toxic Substances and Disease Registry (ATSDR). The ATSDR, based in Atlanta, Georgia, is a federal public health agency of the U.S. Department of Health and Human Services and shares a common office of the Director with the National Center for Environmental Health at the Centers for Disease Control and Prevention (CDC). ATSDR serves the public by using the best science, taking responsive public health actions, and providing trusted health information to prevent harmful exposures and diseases related to toxic substances. The purpose of this column is to inform readers of ATSDR's activities and initiatives to better understand the relationship between exposure to hazardous substances in the environment and their impact on human health and how to protect public health. We believe that the column will provide a valuable resource to our readership by helping to make known the considerable resources and expertise that ATSDR has available to assist communities, states, and others to assure good environmental health practice for all is served. The conclusions of this article are those of the author(s) and do not necessarily represent the views of ATSDR, CDC, or the U.S. Department of Health and Human Services. Gary D. Perlman is an environmental health scientist for ATSDR. He is a commissioned officer with the U.S. Public Health Service and has been deployed in support of numerous environmental disasters including hurricanes Katrina, Rita, Isabelle, and Irene, as well as the Deepwater Horizon oil spill. Laurel Berman is the national brownfields coordinator with ATSDR. She coordinates the ATSDR Brownfields/Land-Reuse Health Initiative. Kathryn Leann Lemley Bing is an environmental health scientist and an ATSDR regional representative in Atlanta. She has specialized

  14. Feasibility of creating a National ALS Registry using administrative data in the United States

    PubMed Central

    KAYE, WENDY E.; SANCHEZ, MARCHELLE; WU, JENNIFER

    2015-01-01

    Uncertainty about the incidence and prevalence of amyotrophic lateral sclerosis (ALS), as well as the role of the environment in the etiology of ALS, supports the need for a surveillance system/registry for this disease. Our aim was to evaluate the feasibility of using existing administrative data to identify cases of ALS. The Agency for Toxic Substances and Disease Registry (ATSDR) funded four pilot projects at tertiary care facilities for ALS, HMOs, and state based organizations. Data from Medicare, Medicaid, the Veterans Health Administration, and Veterans Benefits Administration were matched to data available from site-specific administrative and clinical databases for a five-year time-period (1 January 2001–31 December 2005). Review of information in the medical records by a neurologist was considered the gold standard for determining an ALS case. We developed an algorithm using variables from the administrative data that identified true cases of ALS (verified by a neurologist). Individuals could be categorized into ALS, possible ALS, and not ALS. The best algorithm had sensitivity of 87% and specificity of 85%. We concluded that administrative data can be used to develop a surveillance system/ registry for ALS. These methods can be explored for creating surveillance systems for other neurodegenerative diseases. PMID:24597459

  15. A renal registry for Africa: first steps

    PubMed Central

    Davids, M. Razeen; Eastwood, John B.; Selwood, Neville H.; Arogundade, Fatiu A.; Ashuntantang, Gloria; Benghanem Gharbi, Mohammed; Jarraya, Faiçal; MacPhee, Iain A.M.; McCulloch, Mignon; Plange-Rhule, Jacob; Swanepoel, Charles R.; Adu, Dwomoa

    2016-01-01

    There is a dearth of data on end-stage renal disease (ESRD) in Africa. Several national renal registries have been established but have not been sustainable because of resource limitations. The African Association of Nephrology (AFRAN) and the African Paediatric Nephrology Association (AFPNA) recognize the importance of good registry data and plan to establish an African Renal Registry. This article reviews the elements needed for a successful renal registry and gives an overview of renal registries in developed and developing countries, with the emphasis on Africa. It then discusses the proposed African Renal Registry and the first steps towards its implementation. A registry requires a clear purpose, and agreement on inclusion and exclusion criteria, the dataset and the data dictionary. Ethical issues, data ownership and access, the dissemination of findings and funding must all be considered. Well-documented processes should guide data collection and ensure data quality. The ERA-EDTA Registry is the world's oldest renal registry. In Africa, registry data have been published mainly by North African countries, starting with Egypt and Tunisia in 1975. However, in recent years no African country has regularly reported national registry data. A shared renal registry would provide participating countries with a reliable technology platform and a common data dictionary to facilitate joint analyses and comparisons. In March 2015, AFRAN organized a registry workshop for African nephrologists and then took the decision to establish, for the first time, an African Renal Registry. In conclusion, African nephrologists have decided to establish a continental renal registry. This initiative could make a substantial impact on the practice of nephrology and the provision of services for adults and children with ESRD in many African countries. PMID:26798479

  16. The Global Network Maternal Newborn Health Registry: a multi-national, community-based registry of pregnancy outcomes

    PubMed Central

    2015-01-01

    Background The Global Network for Women's and Children's Health Research (Global Network) supports and conducts clinical trials in resource-limited countries by pairing foreign and U.S. investigators, with the goal of evaluating low-cost, sustainable interventions to improve the health of women and children. Accurate reporting of births, stillbirths, neonatal deaths, maternal mortality, and measures of obstetric and neonatal care is critical to efforts to discover strategies for improving pregnancy outcomes in resource-limited settings. Because most of the sites in the Global Network have weak registration within their health care systems, the Global Network developed the Maternal Newborn Health Registry (MNHR), a prospective, population-based registry of pregnancies at the Global Network sites to provide precise data on health outcomes and measures of care. Methods Pregnant women are enrolled in the MNHR if they reside in or receive healthcare in designated groups of communities within sites in the Global Network. For each woman, demographic, health characteristics and major outcomes of pregnancy are recorded. Data are recorded at enrollment, the time of delivery and at 42 days postpartum. Results From 2010 through 2013 Global Network sites were located in Argentina, Guatemala, Belgaum and Nagpur, India, Pakistan, Kenya, and Zambia. During this period, 283,496 pregnant women were enrolled in the MNHR; this number represented 98.8% of all eligible women. Delivery data were collected for 98.8% of women and 42-day follow-up data for 98.4% of those enrolled. In this supplement, there are a series of manuscripts that use data gathered through the MNHR to report outcomes of these pregnancies. Conclusions Developing public policy and improving public health in countries with poor perinatal outcomes is, in part, dependent upon understanding the outcome of every pregnancy. Because the worst pregnancy outcomes typically occur in countries with limited health registration

  17. The National Neurosurgery Quality and Outcomes Database Qualified Clinical Data Registry: 2015 measure specifications and rationale.

    PubMed

    Parker, Scott L; McGirt, Matthew J; Bekelis, Kimon; Holland, Christopher M; Davies, Jason; Devin, Clinton J; Atkins, Tyler; Knightly, Jack; Groman, Rachel; Zyung, Irene; Asher, Anthony L

    2015-12-01

    Meaningful quality measurement and public reporting have the potential to facilitate targeted outcome improvement, practice-based learning, shared decision making, and effective resource utilization. Recent developments in national quality reporting programs, such as the Centers for Medicare & Medicaid Services Qualified Clinical Data Registry (QCDR) reporting option, have enhanced the ability of specialty groups to develop relevant quality measures of the care they deliver. QCDRs will complete the collection and submission of Physician Quality Reporting System (PQRS) quality measures data on behalf of individual eligible professionals. The National Neurosurgery Quality and Outcomes Database (N(2)QOD) offers 21 non-PQRS measures, initially focused on spine procedures, which are the first specialty-specific measures for neurosurgery. Securing QCDR status for N(2)QOD is a tremendously important accomplishment for our specialty. This program will ensure that data collected through our registries and used for PQRS is meaningful for neurosurgeons, related spine care practitioners, their patients, and other stakeholders. The 2015 N(2)QOD QCDR is further evidence of neurosurgery's commitment to substantively advancing the health care quality paradigm. The following manuscript outlines the measures now approved for use in the 2015 N(2)QOD QCDR. Measure specifications (measure type and descriptions, related measures, if any, as well as relevant National Quality Strategy domain[s]) along with rationale are provided for each measure. PMID:26621418

  18. Ulcer healing time and antibiotic treatment before and after the introduction of the Registry of Ulcer Treatment: an improvement project in a national quality registry in Sweden

    PubMed Central

    Öien, Rut F; Forssell, Henrik W

    2013-01-01

    Objectives To investigate changes in ulcer healing time and antibiotic treatment in Sweden following the introduction of the Registry of Ulcer Treatment (RUT), a national quality registry, in 2009. Design A statistical analysis of RUT data concerning the healing time and antibiotic treatment for patients with hard-to-heal ulcers in Sweden between 2009 and 2012. Setting RUT is a national web-based quality registry used to capture areas of improvement in ulcer care and to structure wound management by registering patients with hard-to-heal leg, foot and pressure ulcers. Registration includes variables such as gender, age, diagnosis, healing time, antibiotic treatment, and ulcer duration and size. Population Every patient with a hard-to-heal ulcer registered with RUT between 2009 and 2012 (n=1417) was included. Main outcome measures Statistical analyses were performed using Stata V.12.1. Healing time was assessed with the Kaplan-Meier analysis and adjustment was made for ulcer size. A log-rank test was used for equality of survivor functions. Results According to the adjusted registry in December 2012, patients’ median age was 80 years (mean 77.5 years, range 11–103 years). The median healing time for all ulcers, adjusted for ulcer size, was 146 days (21 weeks) in 2009 and 63 days (9 weeks) in 2012 (p=0.001). Considering all years between 2009 and 2012, antibiotic treatment for patients with hard-to-heal ulcers was reduced from 71% before registration to 29% after registration of ulcer healing (p=0.001). Conclusions Healing time and antibiotic treatment decreased significantly during 3 years after launch of RUT. PMID:23959752

  19. Validity of the coding for herpes simplex encephalitis in the Danish National Patient Registry

    PubMed Central

    Jørgensen, Laura Krogh; Dalgaard, Lars Skov; Østergaard, Lars Jørgen; Andersen, Nanna Skaarup; Nørgaard, Mette; Mogensen, Trine Hyrup

    2016-01-01

    Background Large health care databases are a valuable source of infectious disease epidemiology if diagnoses are valid. The aim of this study was to investigate the accuracy of the recorded diagnosis coding of herpes simplex encephalitis (HSE) in the Danish National Patient Registry (DNPR). Methods The DNPR was used to identify all hospitalized patients, aged ≥15 years, with a first-time diagnosis of HSE according to the International Classification of Diseases, tenth revision (ICD-10), from 2004 to 2014. To validate the coding of HSE, we collected data from the Danish Microbiology Database, from departments of clinical microbiology, and from patient medical records. Cases were classified as confirmed, probable, or no evidence of HSE. We estimated the positive predictive value (PPV) of the HSE diagnosis coding stratified by diagnosis type, study period, and department type. Furthermore, we estimated the proportion of HSE cases coded with nonspecific ICD-10 codes of viral encephalitis and also the sensitivity of the HSE diagnosis coding. Results We were able to validate 398 (94.3%) of the 422 HSE diagnoses identified via the DNPR. Hereof, 202 (50.8%) were classified as confirmed cases and 29 (7.3%) as probable cases providing an overall PPV of 58.0% (95% confidence interval [CI]: 53.0–62.9). For “Encephalitis due to herpes simplex virus” (ICD-10 code B00.4), the PPV was 56.6% (95% CI: 51.1–62.0). Similarly, the PPV for “Meningoencephalitis due to herpes simplex virus” (ICD-10 code B00.4A) was 56.8% (95% CI: 39.5–72.9). “Herpes viral encephalitis” (ICD-10 code G05.1E) had a PPV of 75.9% (95% CI: 56.5–89.7), thereby representing the highest PPV. The estimated sensitivity was 95.5%. Conclusion The PPVs of the ICD-10 diagnosis coding for adult HSE in the DNPR were relatively low. Hence, the DNPR should be used with caution when studying patients with encephalitis caused by herpes simplex virus. PMID:27330328

  20. Integrated image data and medical record management for rare disease registries. A general framework and its instantiation to theGerman Calciphylaxis Registry.

    PubMed

    Deserno, Thomas M; Haak, Daniel; Brandenburg, Vincent; Deserno, Verena; Classen, Christoph; Specht, Paula

    2014-12-01

    Especially for investigator-initiated research at universities and academic institutions, Internet-based rare disease registries (RDR) are required that integrate electronic data capture (EDC) with automatic image analysis or manual image annotation. We propose a modular framework merging alpha-numerical and binary data capture. In concordance with the Office of Rare Diseases Research recommendations, a requirement analysis was performed based on several RDR databases currently hosted at Uniklinik RWTH Aachen, Germany. With respect to the study management tool that is already successfully operating at the Clinical Trial Center Aachen, the Google Web Toolkit was chosen with Hibernate and Gilead connecting a MySQL database management system. Image and signal data integration and processing is supported by Apache Commons FileUpload-Library and ImageJ-based Java code, respectively. As a proof of concept, the framework is instantiated to the German Calciphylaxis Registry. The framework is composed of five mandatory core modules: (1) Data Core, (2) EDC, (3) Access Control, (4) Audit Trail, and (5) Terminology as well as six optional modules: (6) Binary Large Object (BLOB), (7) BLOB Analysis, (8) Standard Operation Procedure, (9) Communication, (10) Pseudonymization, and (11) Biorepository. Modules 1-7 are implemented in the German Calciphylaxis Registry. The proposed RDR framework is easily instantiated and directly integrates image management and analysis. As open source software, it may assist improved data collection and analysis of rare diseases in near future. PMID:24865858

  1. National Hematopoietic Stem Cells Transplant Registry in Poland: Nationwide Internet Reporting System and Results.

    PubMed

    Łęczycka, A; Dudkiewicz, M; Czerwiński, J; Malanowski, P; Żalikowska-Hołoweńko, J; Danielewicz, R

    2016-06-01

    History of hematopoietic stem cell transplantations in Poland begins in early 1980s; the 1st bone marrow allotransplantation was performed in 1983 in the Central Clinical Hospital of the Military Medical Academy in Warsaw. Following years brought the 1st autologous stem cell transplantations. Ten years later, unrelated bone marrow transplantation was performed for the 1st time by the team of the Hematology and Blood and Marrow Transplantation Unit in Katowice. Since then, hematopoietic stem cell transplantation developed to be standard procedure and one of the most important therapies applied in leukemia treatment. The number of allotransplantations in Poland has grown significantly in the past 2 decades, which generated new needs and problems. In 2005, based on a new Transplant Law, a National Transplants Registry was created. Its main role is to collect data (registration of procedures and follow-up data) related to every transplantation case for stem cells and tissues as well as for organs. We present statistics concerning stem cell transplantations performed in Poland, as collected in the National Transplants Registry in the years 2006-2014. There are 18 centers transplanting hematopoietic stem cells in Poland. The total number of hematopoietic stem cell transplantations performed in 2006-2014 was 3,537, with allotransplantations from relatives accounted for 1,491 and from unrelated donors for 2,046. The main indication for allotransplantation in past years was acute leukemia. PMID:27496493

  2. Developing Statistical Models to Assess Transplant Outcomes Using National Registries: The Process in the United States.

    PubMed

    Snyder, Jon J; Salkowski, Nicholas; Kim, S Joseph; Zaun, David; Xiong, Hui; Israni, Ajay K; Kasiske, Bertram L

    2016-02-01

    Created by the US National Organ Transplant Act in 1984, the Scientific Registry of Transplant Recipients (SRTR) is obligated to publicly report data on transplant program and organ procurement organization performance in the United States. These reports include risk-adjusted assessments of graft and patient survival, and programs performing worse or better than expected are identified. The SRTR currently maintains 43 risk adjustment models for assessing posttransplant patient and graft survival and, in collaboration with the SRTR Technical Advisory Committee, has developed and implemented a new systematic process for model evaluation and revision. Patient cohorts for the risk adjustment models are identified, and single-organ and multiorgan transplants are defined, then each risk adjustment model is developed following a prespecified set of steps. Model performance is assessed, the model is refit to a more recent cohort before each evaluation cycle, and then it is applied to the evaluation cohort. The field of solid organ transplantation is unique in the breadth of the standardized data that are collected. These data allow for quality assessment across all transplant providers in the United States. A standardized process of risk model development using data from national registries may enhance the field. PMID:26814440

  3. Shortcomings of the National Joint Registry: a survey of consultants' views.

    PubMed Central

    Philipson, M. R.; Westwood, M. J.; Geoghegan, J. M.; Henry, A. P. J.; Jefferiss, C. D.

    2005-01-01

    INTRODUCTION: The National Joint Registry (NJR) for England and Wales was launched in April 2003. The UK Department of Health (DoH) awarded the contract to run the NJR to Atomic Energy Authority (AEA) Technology in September 2002. The aim was to etablish the views of a large group of orthopaedic consultants on the new NJR. METHODS: A questionnaire was sent by post to 405 orthopaedic consultants in the Midlands and South West. RESULTS: Overwhelming support was found for the idea of a national joint replacement register that is used for peer-run audit. However, there was wide-spread concern about the lack of orthopaedic representation on the steering committee. The majority of surgeons have concerns about the possible use of NJR data for the production of league tables. PMID:15826420

  4. Intended Versus Inferred Care After PET Performed for Initial Staging in the National Oncologic PET Registry

    PubMed Central

    Hillner, Bruce E.; Tosteson, Anna N.A.; Tosteson, Tor D.; Wang, Qianfei; Song, Yunjie; Hanna, Lucy G.; Siegel, Barry A.

    2013-01-01

    Rationale The National Oncologic PET Registry (NOPR) collected data on intended management before and after PET in cancer patients. We have previously reported that PET was associated with a change in intended management of about one-third of patients and was consistent across cancer types. It is uncertain if intended management plans reflect the actual care these patients received. One approach to assess actual care received is using administrative claims in order to categorize the type and timing of clinical services. Methods 2006-2008 NOPR data were linked to Medicare claims for consenting patients age ≥65 years having an initial staging PET for bladder, ovary, pancreas, small cell lung (SCL), or stomach cancers. We determined the 60-day agreement between claims-inferred care and NOPR treatment plans. Results 4,661 patients were assessed of whom 30-52% had metastatic disease. Planned treatments were about two-thirds mono-therapy, of which 46% was systemic therapy only and one-third combinations. Claims paid by 60 days confirmed the NOPR plan of any systemic therapy, radiotherapy or surgery in 79.3%, 64.7% and 63.6% respectively. Single-mode plans were much more often confirmed: systemic therapy in >85% of patients with ovary, pancreas, and SCL cancers and surgery in >73% of those with bladder, pancreas, and stomach cancers. Intended combination treatments had claims for both in only 28% of patients receiving surgery-based combinations and in 55% receiving chemo-radiotherapy. About 90% of patients with NOPR-planned systemic therapy had evaluation/management claims from a medical oncologist. Age <75 years was associated more often with confirmation of chemotherapy, less often for radiotherapy, but not with confirmation of surgery. Performance status or comorbidity did not explain confirmation rates within action categories, but confirmation rates were higher if the referrer specialized in the planned treatment. Conclusion Claims confirmations of NOPR intent for

  5. ATSDR evaluation of health effects of chemicals. VI. Di(2-ethylhexyl)phthalate. Agency for Toxic Substances and Disease Registry.

    PubMed

    Fay, M; Donohue, J M; De Rosa, C

    1999-12-01

    Di(2-ethylhexyl)phthalate (also known as DEHP, bis(2-ethylhexyl)phthalate, or BEHP; CAS Registry Number 117-81-7) is a widely-used plasticizer. It is found in numerous plastic articles, such as paints, inks, floor tiles, upholstery, shower curtains, footwear, plastic bags, food-packaging materials, toys, and medical tubing. Not surprisingly, DEHP appears at many waste sites. As part of its mandate, the Agency for Toxic Substances and Disease Registry (ATSDR) prepares toxicological profiles on hazardous chemicals that are of greatest public health concern at Comprehensive Environmental Response, Compensation, and Liability Act (CERCLA) National Priority List (NPL) sites. These profiles comprehensively summarize toxicological and environmental information. This article constitutes the release of the bulk of ATSDR's profile for DEHP (ATSDR, 1993) into the mainstream scientific literature. An extensive listing of human and animal health effects, organized by route, duration, and endpoint, is presented. Toxicological information on toxicokinetics, biomarkers, interactions, sensitive subpopulations, reducing toxicity after exposure, and relevance to public health is also included. Environmental information encompasses physical properties, production and use, environmental fate, levels seen in the environment, analytical methods, and a listing of regulations. ATSDR, at the behest of Congress and therefore the citizenry, prepares these profiles to inform the public about site contaminants. PMID:10786378

  6. Surgery and Risk of Sporadic Creutzfeldt-Jakob Disease in Denmark and Sweden: Registry-Based Case-Control Studies

    PubMed Central

    Mahillo-Fernandez, Ignacio; de Pedro-Cuesta, Jesús; Bleda, Maria José; Cruz, Mabel; Mølbak, Kåre; Laursen, Henning; Falkenhorst, Gerhard; Martínez-Martín, Pablo; Siden, Åke

    2008-01-01

    Background Epidemiologic evidence of surgical transmission of sporadic Creutzfeldt-Jakob disease (sCJD) remains controversial. Methods From Danish and Swedish registries we selected 167 definite and probable sCJD cases (with onset between 1987 and 2003) and 3,059 controls (835 age-, sex-, and residence-matched, and 2,224 unmatched). Independent of case/control status, surgical histories were obtained from National Hospital Discharge Registries. Surgical procedures were categorized by body system group and lag time to onset of sCJD. Exposure frequencies were compared using logistic regression. Results A history of any major surgery, conducted ≥20 years before sCJD onset, was more common in cases than both matched (OR = 2.44, 95% CI = 1.46–4.07) and unmatched controls (OR = 2.25, 95% CI = 1.48–3.44). This observation was corroborated by a linear increase in risk per surgical discharge (OR = 1.57, 95% CI = 1.13–2.18; OR = 1.50, 95% CI = 1.18–1.91). Surgery of various body systems, including peripheral vessels, digestive system and spleen, and female genital organs, was significantly associated with increased sCJD risk. Conclusions A variety of major surgical procedures constitute a risk factor for sCJD following an incubation period of many years. A considerable number of sCJD cases may originate from health care-related accidental transmission. PMID:18843192

  7. Incidence of primary breast cancer in Iran: Ten-year national cancer registry data report.

    PubMed

    Jazayeri, Seyed Behzad; Saadat, Soheil; Ramezani, Rashid; Kaviani, Ahmad

    2015-08-01

    Breast cancer is the leading type of malignancy and the leading cause of cancer-related deaths in women worldwide. The screening programs and advances in the treatment of patients with breast cancer have led to an increase in overall survival. Cancer registry systems play an important role in providing basic data for research and the monitoring of the cancer status. In this study, the results of the 10-year national cancer registry (NCR) of Iran in breast cancer are reviewed. NCR database records were searched for primary breast cancer records according to ICD-O-3 coding and the cases were reviewed. A total of 52,068 cases were found with the coding of primary breast cancer. Females constituted 97.1% of the cases. Breast cancer was the leading type of cancer in Iranian females, accounting for 24.6% of all cancers. The mean age of the women with breast cancer was 49.6 years (95%CI 49.5-49.6). Most of the cases (95.7%) were registered as having invasive pathologies (behavior code 3). The most common morphology of primary breast cancer was invasive ductal carcinoma (ICD-O 8500/3) followed by invasive lobular carcinoma (ICD-O 8520/3) with relative frequencies of 77.8% and 5.2%, respectively. The average annual crude incidence of primary breast cancer in females was 22.6 (95%CI 22.1-23.1) per 100,000 females, with an age-standardized rate (ASR) of 27.4 (95%CI 22.5-35.9). There were no data on survival, staging or immunohistochemical marker(s) of the breast-cancer-registered cases. The incidence of breast cancer in Iran is lower than in low-middle-income neighboring countries. The NCR data registry of breast cancer is not accurate in monitoring the effect of screening programs or determining the current status of breast cancer in Iran. Screening programs of breast cancer in Iran have failed to enhance the detection of the patients with in situ lesion detection. A quality breast cancer registry and a screening program for breast cancer are both needed. PMID:26070507

  8. Down syndrome: issues to consider in a national registry, research database and biobank.

    PubMed

    McCabe, Linda L; McCabe, Edward R B

    2011-01-01

    As the quality of life for individuals with Down syndrome continues to improve due to anticipatory healthcare, early intervention, mainstreaming in schools, and increased expectations, the lack of basic information regarding individuals with Down syndrome is being recognized, and the need to facilitate research through a national registry, research database and biobank is being discussed. We believe that there should not be ownership of the samples and information, but instead prefer stewardship of the samples and information to benefit the participants who provided them. We endorse a model with data and sample managers and a research review board to interface between the investigators and participants. Information and samples would be coded, and only a few data managers would know the relationship between the codes and identifying information. Research results once published should be included in an online newsletter. If appropriate, individual results should be shared with participants. A Down syndrome registry, research database and biobank should be accountable to participants, families, medical care providers, government, and funding sources. PMID:21501965

  9. Hematologic malignancies in South Africa 2000-2006: analysis of data reported to the National Cancer Registry.

    PubMed

    Schonfeld, Sara J; Erdmann, Friederike; Wiggill, Tracey; Singh, Elvira; Kellett, Patricia; Babb, Chantal; Schüz, Joachim

    2016-04-01

    Little is known about the incidence patterns of hematologic malignancies in Sub-Saharan Africa, including South Africa. We estimated incidence rates of pathology-confirmed adult cases of leukemia, myeloma and related diseases (myeloma), Hodgkin lymphoma (HL), and non-Hodgkin lymphoma (NHL) reported to the National Cancer Registry of South Africa (NCR) between 2000 and2006, by age, gender, and population group (Black, White, Coloured, Asian/Indian). Gender-specific age-standardized rates were calculated overall and by population group and incidence rate ratios (IRRs) were estimated using Poisson regression models. Between 2000 and 2006, there were 14662 cases of leukemia, myeloma, HL, and NHL reported to the registry. Incidence rates of reported hematologic malignancies were generally 20-50% higher among males than females. Our analyses suggested marked differences in the rates of reported hematologic malignancies by population group which were most pronounced when comparing the White versus Black population groups (IRRs ranging from 1.6 for myeloma to 3.8 for HL for males and females combined). Challenges related to diagnosis and reporting of cancers may play a role in the patterns observed by population group while the set-up of the NCR (pathology-based) could lead to some degree of under-ascertainment in all groups. This is the first country-wide report of the incidence of hematologic malignancies in South Africa. Despite challenges, it is important to analyze and report available national cancer incidence data to raise awareness of the cancer burden and to characterize patterns by demographic characteristics so as ultimately to improve the provision of cancer-related health care. PMID:26773310

  10. Cancer Incidence in Egypt: Results of the National Population-Based Cancer Registry Program

    PubMed Central

    Ibrahim, Amal S.; Khaled, Hussein M.; Mikhail, Nabiel NH; Baraka, Hoda; Kamel, Hossam

    2014-01-01

    Background. This paper aims to present cancer incidence rates at national and regional level of Egypt, based upon results of National Cancer Registry Program (NCRP). Methods. NCRP stratified Egypt into 3 geographical strata: lower, middle, and upper. One governorate represented each region. Abstractors collected data from medical records of cancer centers, national tertiary care institutions, Health Insurance Organization, Government-Subsidized Treatment Program, and death records. Data entry was online. Incidence rates were calculated at a regional and a national level. Future projection up to 2050 was also calculated. Results. Age-standardized incidence rates per 100,000 were 166.6 (both sexes), 175.9 (males), and 157.0 (females). Commonest sites were liver (23.8%), breast (15.4%), and bladder (6.9%) (both sexes): liver (33.6%) and bladder (10.7%) among men, and breast (32.0%) and liver (13.5%) among women. By 2050, a 3-fold increase in incident cancer relative to 2013 was estimated. Conclusion. These data are the only available cancer rates at national and regional levels of Egypt. The pattern of cancer indicated the increased burden of liver cancer. Breast cancer occupied the second rank. Study of rates of individual sites of cancer might help in giving clues for preventive programs. PMID:25328522

  11. The Danish Twin Registry: Linking Surveys, National Registers, and Biological Information

    PubMed Central

    Skytthe, Axel; Christiansen, Lene; Kyvik, Kirsten Ohm; Bødker, Frans L.; Hvidberg, Lars; Petersen, Inge; Nielsen, Morten M. F.; Bingley, Paul; Hjelmborg, Jacob; Tan, Qihua; Holm, Niels V.; Vaupel, James W.; McGue, Matt; Christensen, Kaare

    2013-01-01

    Over the last 60 years, the resources and the research in the Danish Twin Registry (DTR) have periodically been summarized. Here, we give a short overview of the DTR and a more comprehensive description of new developments in the twenty-first century. First, we outline our experience over the last decade of combining questionnaire and survey data with national demographic, social, and health registers in Statistics Denmark. Second, we describe our most recent data collection effort, which was conducted during the period 2008–2011 and included both in-person assessments of 14,000+ twins born 1931–1969 and sampling of biological material, hereby expanding and consolidating the DTR biobank. Third, two examples of intensively studied twin cohorts are given. The new developments in the DTR in the last decade have facilitated the ongoing research and laid the groundwork for new research directions. PMID:23084092

  12. A new data management system for the French National Registry of human alveolar echinococcosis cases.

    PubMed

    Charbonnier, Amandine; Knapp, Jenny; Demonmerot, Florent; Bresson-Hadni, Solange; Raoul, Francis; Grenouillet, Frédéric; Millon, Laurence; Vuitton, Dominique Angèle; Damy, Sylvie

    2014-01-01

    Alveolar echinococcosis (AE) is an endemic zoonosis in France due to the cestode Echinococcus multilocularis. The French National Reference Centre for Alveolar Echinococcosis (CNR-EA), connected to the FrancEchino network, is responsible for recording all AE cases diagnosed in France. Administrative, epidemiological and medical information on the French AE cases may currently be considered exhaustive only on the diagnosis time. To constitute a reference data set, an information system (IS) was developed thanks to a relational database management system (MySQL language). The current data set will evolve towards a dynamic surveillance system, including follow-up data (e.g. imaging, serology) and will be connected to environmental and parasitological data relative to E. multilocularis to better understand the pathogen transmission pathway. A particularly important goal is the possible interoperability of the IS with similar European and other databases abroad; this new IS could play a supporting role in the creation of new AE registries. PMID:25526544

  13. A new data management system for the French National Registry of human alveolar echinococcosis cases

    PubMed Central

    Charbonnier, Amandine; Knapp, Jenny; Demonmerot, Florent; Bresson-Hadni, Solange; Raoul, Francis; Grenouillet, Frédéric; Millon, Laurence; Vuitton, Dominique Angèle; Damy, Sylvie

    2014-01-01

    Alveolar echinococcosis (AE) is an endemic zoonosis in France due to the cestode Echinococcus multilocularis. The French National Reference Centre for Alveolar Echinococcosis (CNR-EA), connected to the FrancEchino network, is responsible for recording all AE cases diagnosed in France. Administrative, epidemiological and medical information on the French AE cases may currently be considered exhaustive only on the diagnosis time. To constitute a reference data set, an information system (IS) was developed thanks to a relational database management system (MySQL language). The current data set will evolve towards a dynamic surveillance system, including follow-up data (e.g. imaging, serology) and will be connected to environmental and parasitological data relative to E. multilocularis to better understand the pathogen transmission pathway. A particularly important goal is the possible interoperability of the IS with similar European and other databases abroad; this new IS could play a supporting role in the creation of new AE registries. PMID:25526544

  14. The Danish Twin Registry: linking surveys, national registers, and biological information.

    PubMed

    Skytthe, Axel; Christiansen, Lene; Kyvik, Kirsten Ohm; Bødker, Frans L; Hvidberg, Lars; Petersen, Inge; Nielsen, Morten M F; Bingley, Paul; Hjelmborg, Jacob; Tan, Qihua; Holm, Niels V; Vaupel, James W; McGue, Matt; Christensen, Kaare

    2013-02-01

    Over the last 60 years, the resources and the research in the Danish Twin Registry (DTR) have periodically been summarized. Here, we give a short overview of the DTR and a more comprehensive description of new developments in the twenty-first century. First, we outline our experience over the last decade of combining questionnaire and survey data with national demographic, social, and health registers in Statistics Denmark. Second, we describe our most recent data collection effort, which was conducted during the period 2008-2011 and included both in-person assessments of 14,000+ twins born 1931-1969 and sampling of biological material, hereby expanding and consolidating the DTR biobank. Third, two examples of intensively studied twin cohorts are given. The new developments in the DTR in the last decade have facilitated the ongoing research and laid the groundwork for new research directions. PMID:23084092

  15. 75 FR 51075 - National Registry of Evidence-Based Programs and Practices (NREPP): Open Submission Period for...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-08-18

    ... Federal Register (70 FR 50381, Aug. 26, 2005; 71 FR 13133, March 14, 2006). Since 2006, SAMHSA has held... inclusion on the NREPP Web site (71 FR 37590, June 30, 2006; 72 FR 30814, June 4, 2007). This notice... HUMAN SERVICES Substance Abuse and Mental Health Services Administration National Registry of...

  16. Gender and Geographic Differences in Developmental Delays among Young Children: Analysis of the Data from the National Registry in Taiwan

    ERIC Educational Resources Information Center

    Lai, Der-Chung; Tseng, Yen-Cheng; Guo, How-Ran

    2011-01-01

    Although developmental delays are not uncommon in children, the incidence is seldom assessed, and the reported prevalence varies widely. In Taiwan, the government mandates the reporting of suspected cases. Using the national registry data, we conducted a study to estimate the incidence and prevalence of developmental delays in young children in…

  17. A Squandered Opportunity?: A Review of SAMHSA's National Registry of Evidence-Based Programs and Practices for Offenders

    ERIC Educational Resources Information Center

    Wright, Benjamin J.; Zhang, Sheldon X.; Farabee, David

    2012-01-01

    In the past decade, the push for evidence-based programs has taken on unprecedented prominence in the fields of substance abuse and correctional treatment as a key determinant for intervention funding. The National Registry of Evidence-based Programs and Practices (NREPP), managed and funded by the Substance Abuse and Mental Health Services…

  18. Patient perspectives on switching disease-modifying therapies in the NARCOMS registry

    PubMed Central

    Salter, Amber R; Marrie, Ruth Ann; Agashivala, Neetu; Belletti, Daniel A; Kim, Edward; Cutter, Gary R; Cofield, Stacey S; Tyry, Tuula

    2014-01-01

    Introduction The evolving landscape of disease-modifying therapies (DMTs) for multiple sclerosis raises important questions about why patients change DMTs. Physicians and patients could benefit from a better understanding of the reasons for switching therapy. Purpose To investigate the reasons patients switch DMTs and identify characteristics associated with the decision to switch. Method The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry conducted a supplemental survey among registry participants responding to the 2011 update survey. The supplemental survey investigated reasons for switching DMT, origin of the discussion of DMT change, and which factors influenced the decision. Chi-square tests, Fisher’s exact tests, and logistic regression were used for the analyses. Results Of the 691 eligible candidates, 308 responded and met the inclusion criteria (relapsing disease course, switched DMT after September 2010). The responders were 83.4% female, on average 52 years old, with a median (interquartile range) Patient-Determined Disease Steps score of 4 (2–5). The most recent prior therapy included first-line injectables (74.5%), infusions (18.1%), an oral DMT (3.4%), and other DMTs (4.0%). The discussion to switch DMT was initiated almost equally by physicians and participants. The primary reason for choosing the new DMT was based most frequently on physician’s recommendation (24.5%) and patient perception of efficacy (13.7%). Conclusion Participants frequently initiated the discussion regarding changing DMT, although physician recommendations regarding the specific therapy were still weighed highly. Long-term follow-up of these participants will provide valuable information on their disease trajectory, satisfaction with, and effectiveness of their new medication. PMID:25045254

  19. The French Gaucher’s disease registry: clinical characteristics, complications and treatment of 562 patients

    PubMed Central

    2012-01-01

    Background Clinical features, complications and treatments of Gaucher’s disease (GD), a rare autosomal–recessive disorder due to a confirmed lysosomal enzyme (glucocerebrosidase) deficiency, are described. Methods All patients with known GD, living in France, with ≥1 consultations (1980–2010), were included in the French GD registry, yielding the following 4 groups: the entire cohort, with clinical description; and its subgroups: patients with ≥1 follow-up visits, to investigate complications; recently followed (2009–2010) patients; and patients treated during 2009–2010, to examine complications before and during treatment. Data are expressed as medians (range) for continuous variables and numbers (%) for categorical variables. Results Among the 562 registry patients, 265 (49.6%) were females; 454 (85.0%) had type 1, 22 (4.1%) type 2, 37 (6.9%) perinatal–lethal type and 21 (3.9%) type 3. Median ages at first GD symptoms and diagnosis, respectively, were 15 (0–77) and 22 (0–84) years for all types. The first symptom diagnosing GD was splenomegaly and/or thrombocytopenia (37.6% and 26.3%, respectively). Bone-marrow aspiration and/or biopsy yielded the diagnosis for 54.7% of the patients, with enzyme deficiency confirming GD for all patients. Birth incidence rate was estimated at 1/50,000 and prevalence at 1/136,000. For the 378 followed patients, median follow-up was 16.2 (0.1–67.6) years. Major clinical complications were bone events (BE; avascular necrosis, bone infarct or pathological fracture) for 109 patients, splenectomy for 104, and Parkinson’s disease for 14; 38 patients died (neurological complications for 15 type-2 and 3 type-3 patients, GD complications for 11 type-1 and another disease for 9 type-1 patients). Forty-six had monoclonal gammopathy. Among 283 recently followed patients, 36 were untreated and 247 had been treated during 2009–2010; 216 patients received treatment in December 2010 (126 with imiglucerase, 45

  20. National Cancer Patient Registry--a patient registry/clinical database to evaluate the health outcomes of patients undergoing treatment for cancers in Malaysia.

    PubMed

    Lim, G C C; Azura, D

    2008-09-01

    Cancer burden in Malaysia is increasing. Although there have been improvements in cancer treatment, these new therapies may potentially cause an exponential increase in the cost of cancer treatment. Therefore, justification for the use of these treatments is mandated. Availability of local data will enable us to evaluate and compare the outcome of our patients. This will help to support our clinical decision making and local policy, improve access to treatment and improve the provision and delivery of oncology services in Malaysia. The National Cancer Patient Registry was proposed as a database for cancer patients who seek treatment in Malaysia. It will be a valuable tool to provide timely and robust data on the actual setting in oncology practice, safety and cost effectiveness of treatment and most importantly the outcome of these patients. PMID:19230247

  1. Early infantile Krabbe disease: results of the World-Wide Krabbe Registry.

    PubMed

    Duffner, Patricia K; Barczykowski, Amy; Jalal, Kabir; Yan, Li; Kay, Denise M; Carter, Randy L

    2011-09-01

    New York State began screening for Krabbe disease in 2006 to identify infants with Krabbe disease before symptom onset. Because neither galactocerebrosidase activity nor most genotypes reliably predict phenotype, the World Wide Registry was developed to determine whether other clinical/neurodiagnostic data could predict early infantile Krabbe disease in the newborn screening population. Data on disease course, galactocerebrosidase activity, DNA mutations, and initial neurodiagnostic studies in 67 symptomatic children with early infantile Krabbe disease were obtained from parent questionnaires and medical records. Initial signs included crying/irritability, cortical fisting, and poor head control. Galactocerebrosidase activity was uniformly low. Eight of 17 manifested novel mutations. Ninety-two percent (n = 25) exhibited elevated cerebrospinal fluid protein; 76% (n = 42) demonstrated abnormal magnetic resonance images; 67% (n = 15) exhibited abnormal computed tomography findings; 43% (n = 28) produced abnormal electroencephalogram findings; 100% (n = 5) demonstrated abnormal nerve conduction velocities; 83% (n = 6) produced abnormal brainstem evoked responses; and 50% (n = 6) exhibited abnormal visual evoked responses. One, 2, and 3 year survivals were 60%, 26%, and 14%, respectively. Although most symptomatic patients with the early infantile phenotype manifested abnormal cerebrospinal fluid protein, magnetic resonance imaging, brainstem evoked responses, and nerve conduction velocities, studies of affected children may be normal. Other biomarkers are needed to predict phenotype in the newborn screening population. PMID:21824559

  2. The findings of the Agency for Toxic Substances and Disease Registry Medical Waste Tracking Act report.

    PubMed Central

    Lichtveld, M Y; Rodenbeck, S E; Lybarger, J A

    1992-01-01

    The Agency for Toxic Substances and Disease Registry (ATSDR) report "The Public Health Implications of Medical Waste: A Report to Congress" has been finalized and submitted to Congress. The report is a comprehensive review of all available data and information on the subject. Based on the data developed in the report, ATSDR concludes that the general public is not likely to be adversely affected by medical waste generated in the traditional health setting. However, the increase of in-home health care and other sources of nonregulated medical waste (e.g., intravenous drug users) provides opportunities for the general public to contact medical waste. In addition, ATSDR concludes that public health concerns exist for selected occupations involved with medical waste. These populations include janitorial and laundry workers, nurses, emergency medical personnel, and refuse workers. The ATSDR report also defines what material should be managed as medical waste and identifies research needs related to medical waste. PMID:1486856

  3. A marked decline in the incidence of renal replacement therapy for amyloidosis associated with inflammatory rheumatic diseases - data from nationwide registries in Finland.

    PubMed

    Immonen, Kai; Finne, Patrik; Grönhagen-Riska, Carola; Pettersson, Tom; Klaukka, Timo; Kautiainen, Hannu; Hakala, Markku

    2011-03-01

    Risk for amyloidosis in rheumatic diseases is associated with a long-lasting inflammation. To assess possible changes in the incidence of terminal uraemia due to amyloidosis associated with rheumatic diseases on a nationwide basis, we scrutinised the files of the Finnish Registry for Kidney Diseases for patients suffering from amyloidosis associated with rheumatoid arthritis (RA), ankylosing spondylitis (AS) or juvenile idiopathic arthritis (JIA) over the period 1995-2008. The registry has an estimated 97-99% coverage of all patients accepted for renal replacement therapy (RRT) in the country. Data on the consumption of antirheumatic drugs were collected from two sources: the Social Insurance Institution's Drug Reimbursement Register, and the Sales Register of the National Agency for Medicines from the above period. Altogether 264 cases were identified. Two hundred twenty-nine of them had RA, 15 AS and 20 JIA. When the total annual number of new admissions to RRT varied between 20 and 37 at the end of 1990s, it was under half of that from 2002 onwards. Over this period, the number of users of low-dose methotrexate (MTX) has increased 3.6-fold, the drug being the most frequently used disease modifying anti-rheumatic drug in Finland. The present nationwide series is the first to show that the incidence of end-stage renal disease due to amyloidosis associated with rheumatic diseases is decreasing. An obvious reason for this is intensive anti-rheumatic drug therapy. PMID:21284495

  4. The epidemiology of cancer in Angola—results from the cancer registry of the national oncology centre of Luanda, Angola

    PubMed Central

    Armando, António; Bozzetti, Mary Clarisse; de Medeiros Zelmanowicz, Alice; Miguel, Fernando

    2015-01-01

    Knowledge of the epidemiological profile of cancer is a key step in planning national cancer policy. The main objective of this study was to characterize the epidemiological profile of cancer in Angola based on cases of cancer registered at the National Oncology Centre (NOC) of Luanda, the only Angolan hospital to specialize in cancer treatment and diagnosis. The study consisted of a cross-sectional historical review of cases treated at the NOC between 2007 and 2011. The following variables were analysed: tumour location, diagnostic basis, and source of referral, as well as patient age, sex, place of residence, and the stage of the disease. The NOC registered a total of 4,791 patients throughout the study period, at an annual average of 958 cases. The most commonly diagnosed cancers were breast (20.5%), cervical (16.5%), and head and neck cancer (10.6%), followed by lymphoma (7.2%), Kaposi sarcoma (6.1%), and prostate cancer (4%). A total of 76% of patients were under 60 years old, and 10% were less than 15 years old. Of the total number of patients with cancer treated at the NOC, 77.3% lived in the Luanda province. Staging data were only available for patients with breast or cervical cancer, and an analysis of this variable showed that most of these individuals were in advanced stages of the disease. In the absence of a population-based cancer registry, this study constitutes a reasonable assessment of the epidemiological profile of cancer in Angola. PMID:25729423

  5. Association of Pulmonary Tuberculosis and Diabetes in Mexico: Analysis of the National Tuberculosis Registry 2000–2012

    PubMed Central

    Delgado-Sánchez, Guadalupe; García-García, Lourdes; Castellanos-Joya, Martín; Cruz-Hervert, Pablo; Ferreyra-Reyes, Leticia; Ferreira-Guerrero, Elizabeth; Hernández, Andrés; Ortega-Baeza, Victor Manuel; Montero-Campos, Rogelio; Sulca, José Antonio; Martínez-Olivares, Ma. de Lourdes; Mongua-Rodríguez, Norma; Baez-Saldaña, Renata; González-Roldán, Jesús Felipe; López-Gatell, Hugo; Ponce-de-León, Alfredo; Sifuentes-Osornio, José; Jiménez-Corona, María Eugenia

    2015-01-01

    Background Tuberculosis (TB) remains a public health problem in Mexico while the incidence of diabetes mellitus type 2 (DM) has increased rapidly in recent years. Objective To describe the trends of incidence rates of pulmonary TB associated with DM and not associated with DM and to compare the results of treatment outcomes in patients with and without DM. Materials and Methods We analysed the National Tuberculosis Registry from 2000 to 2012 including patients with pulmonary TB among individuals older than 20 years of age. The association between DM and treatment failure was analysed using logistic regression, accounting for clustering due to regional distribution. Results In Mexico from 2000 to 2012, the incidence rates of pulmonary TB associated to DM increased by 82.64%, (p <0.001) in contrast to rates of pulmonary TB rate without DM, which decreased by 26.77%, (p <0.001). Patients with a prior diagnosis of DM had a greater likelihood of failing treatment (adjusted odds ratio, 1.34 (1.11–1.61) p <0.002) compared with patients who did not have DM. There was statistical evidence of interaction between DM and sex. The odds of treatment failure were increased in both sexes. Conclusion Our data suggest that the growing DM epidemic has an impact on the rates of pulmonary TB. In addition, patients who suffer from both diseases have a greater probability of treatment failure. PMID:26075393

  6. Low/No Calorie Sweetened Beverage Consumption in the National Weight Control Registry

    PubMed Central

    Catenacci, Victoria A.; Pan, Zhaoxing; Thomas, J. Graham; Ogden, Lorraine G.; Roberts, Susan A.; Wyatt, Holly R.; Wing, Rena R.; Hill, James O.

    2015-01-01

    Objective The aim of this cross-sectional study was to evaluate prevalence of and strategies behind low/no calorie sweetened beverage (LNCSB) consumption in successful weight loss maintainers. Methods An online survey was administered to 434 members of the National Weight Control Registry (NWCR, individuals who have lost ≥13.6 kg and maintained weight loss for > 1 year). Results While few participants (10%) consume sugar-sweetened beverages on a regular basis, 53% regularly consume LNCSB. The top five reasons for choosing LNCSB were for taste (54%), to satisfy thirst (40%), part of routine (27%), to reduce calories (22%) and to go with meals (21%). The majority who consume LNCSB (78%) felt they helped control total calorie intake. Many participants considered changing patterns of beverage consumption to be very important in weight loss (42%) and maintenance (40%). Increasing water was by far the most common strategy, followed by reducing regular calorie beverages. Conclusions Regular consumption of LNCSB is common in successful weight loss maintainers for various reasons including helping individuals to limit total energy intake. Changing beverage consumption patterns was felt to be very important for weight loss and maintenance by a substantial percentage of successful weight loss maintainers in the NWCR. PMID:25044563

  7. WWW accessible system for national/regional registries of clinical results of cord blood transplants: a tool to facilitate cooperative clinical research.

    PubMed

    Fernández, M N; Pascual, M; Bañas, M H; Bravo, G; Salvador, C H

    1998-12-01

    A system, accessible via internet, has been developed to support the Spanish Registry of Cord Blood Transplants (RETSCU). The system includes a database of clinical results directly accessible by transplant centers (TCs) and cord blood banks (CBBs) (restricted to own cases regarding primary data and unrestricted regarding statistics derived from validated data) and gives open access to Web pages containing results approved for publication. It also includes internal mail for two-way and broadcast messages. Patients' data are essentially those included in Eurocord forms. Additional features of the system are: confidentiality; inalterability of validated primary data; identifiability of data sources. The Unix central computer is accessible via the WWW. For security, data transmission is encrypted and passwords are required for access. Copies are regularly updated. Data can be loaded from CBBs and TCs. The procedure for creating and updating records is user-friendly, with the possibility of errors being minimized by extensive automated checks. Validation of patients' records by a manager is required before making data available for general statistical analysis. TCs and CBBs may retrieve data on their own cases, regardless of validation, as individual records or in tables directly transferable to common statistical programs. Statistical analysis may be done on validated data from all the patients in the Registry or from groups selected according to HLA compatibility and disease, type of transplant (related/unrelated), or protocol. Several similarly designed and managed national/regional Registries might be networked and their data integrated into a multinational Registry. Our system would require some additional developments to be used in this way. PMID:9949627

  8. Using administrative medical claims data to supplement state disease registry systems for reporting zoonotic infections

    PubMed Central

    Coulter, Steven; Conner, William

    2013-01-01

    Objective To determine what, if any, opportunity exists in using administrative medical claims data for supplemental reporting to the state infectious disease registry system. Materials and methods Cases of five tick-borne (Lyme disease (LD), babesiosis, ehrlichiosis, Rocky Mountain spotted fever (RMSF), tularemia) and two mosquito-borne diseases (West Nile virus, La Crosse viral encephalitis) reported to the Tennessee Department of Health during 2000–2009 were selected for study. Similarly, medically diagnosed cases from a Tennessee-based managed care organization (MCO) claims data warehouse were extracted for the same time period. MCO and Tennessee Department of Health incidence rates were compared using a complete randomized block design within a general linear mixed model to measure potential supplemental reporting opportunity. Results MCO LD incidence was 7.7 times higher (p<0.001) than that reported to the state, possibly indicating significant under-reporting (∼196 unreported cases per year). MCO data also suggest about 33 cases of RMSF go unreported each year in Tennessee (p<0.001). Three cases of babesiosis were discovered using claims data, a significant finding as this disease was only recently confirmed in Tennessee. Discussion Data sharing between MCOs and health departments for vaccine information already exists (eg, the Vaccine Safety Datalink Rapid Cycle Analysis project). There may be a significant opportunity in Tennessee to supplement the current passive infectious disease reporting system with administrative claims data, particularly for LD and RMSF. Conclusions There are limitations with administrative claims data, but health plans may help bridge data gaps and support the federal administration's vision of combining public and private data into one source. PMID:22811492

  9. Impact of screening versus symptomatic measurement of deep vein thrombosis in a national quality improvement registry

    PubMed Central

    De Martino, Randall R.; Beck, Adam W.; Edwards, Matthew S.; Corriere, Matthew A.; Wallaert, Jessica B.; Stone, David H.; Cronenwett, Jack L.; Goodney, Philip P.

    2013-01-01

    Background Deep vein thrombosis (DVT) is a quality measure recorded by initiatives such as the National Surgical Quality Improvement Program (NSQIP). However, because surveillance-detected DVT rates may be higher than symptomatic DVT rates, we examined how differences in the method of DVT detection may affect the use of this quality measure. Methods Using the NSQIP database (2007–2009), we compared DVT rates of vascular (amputation, open aortic procedures, and lower extremity bypass) and nonvascular (prostatectomy, gastric bypass [GBP], and hip arthroplasty) operations. Using a predefined literature search strategy, we compared the incidence of DVT in NSQIP to the incidence of DVT reported in published literature, diagnosed by symptomatic status or by surveillance studies. Results Within NSQIP, the overall incidence of postoperative DVT was 0.7%. This varied from 0.3% after GBP to 1.8% after open aortic surgery. Across all procedures except amputation, the incidence of DVT in NSQIP was similar to the incidence of DVT reported in our literature survey of “symptomatic” DVTs. The relative rate (RR) of literature-derived symptomatic DVTs to NSQIP ranged from 0.7 for aortic cases (95% confidence interval [CI], 0.3–1.7) to 1.4 (95% CI, .7–3.1) for GBP. Overall, surveillance studies had 11.6 higher RR of DVT compared to NSQIP (95% CI, 10.5–13), ranging from 2.6 for GBP (95% CI, 1.4–5) to 14 .5 for hip arthroplasty (95% CI, 10.5–20). Conclusions The incidence of DVT reported in NSQIP is similar to the reported incidence of symptomatic DVT for many high-risk procedures but is much lower than rates of DVT reported in surveillance studies. Clear delineation of symptomatic vs surveillance detection of DVT would improve the usefulness of this measurement in quality improvement registries. PMID:22832263

  10. Methodological challenges in monitoring new treatments for rare diseases: lessons from the cryopyrin-associated periodic syndrome registry

    PubMed Central

    2013-01-01

    Background The Cryopyrin-Associated Periodic Syndromes (CAPS) are a group of rare hereditary autoinflammatory diseases and encompass Familial Cold Autoinflammatory Syndrome (FCAS), Muckle-Wells Syndrome (MWS), and Neonatal Onset Multisystem Inflammatory Disease (NOMID). Canakinumab is a monoclonal antibody directed against IL-1 beta and approved for CAPS patients but requires post-approval monitoring due to low and short exposures during the licensing process. Creative approaches to observational methodology are needed, harnessing novel registry strategies to ensure Health Care Provider reporting and patient monitoring. Methods A web-based registry was set up to collect information on long-term safety and effectiveness of canakinumab for CAPS. Results Starting in November 2009, this registry enrolled 241 patients in 43 centers and 13 countries by December 31, 2012. One-third of the enrolled population was aged < 18; the overall population is evenly divided by gender. Enrolment is ongoing for children. Conclusions Innovative therapies in orphan diseases require post-approval structures to enable in depth understanding of safety and natural history of disease. The rarity and distribution of such diseases and unpredictability of treatment require innovative methods for enrolment and follow-up. Broad international practice-based recruitment and web-based data collection are practical. PMID:24016338

  11. National Kidney Disease Education Program

    MedlinePlus

    ... from our online catalog . Alternate Language URL National Kidney Disease Education Program (NKDEP) Page Content Improving the ... kidney disease. Minorities Are at Higher Risk for Kidney Disease. If you are African American, Hispanic, or ...

  12. National Kidney Disease Education Program

    MedlinePlus

    ... from our online catalog . Alternate Language URL National Kidney Disease Education Program (NKDEP) Page Content Improving the understanding, ... kidney disease. Minorities Are at Higher Risk for Kidney Disease. If you are African American, Hispanic, or American ...

  13. Cost of care for cystic fibrosis: an investigation of cost determinants using national registry data.

    PubMed

    Gu, Yuanyuan; García-Pérez, Sonia; Massie, John; van Gool, Kees

    2015-09-01

    Cystic fibrosis (CF) is a progressive disease with treatments intensifying as patients get older and severity worsens. To inform policy makers about the cost burden in CF, it is crucial to understand what factors influence the costs and how they affect the costs. Based on 1,060 observations (from 731 patients) obtained from the Australian Data Registry, individual annual health care costs were calculated and a regression analysis was carried out to examine the impact of multiple variables on the costs. A method of retransformation and a hypothetical patient were used for cost analysis. We show that an additional one unit improvement of FEV1pp (i.e., forced expiratory volume in 1 s as a percentage of predicted volume) reduces the costs by 1.4%, or for a hypothetical patient whose FEV1pp is 73 the cost reduction is A$252. The presence of chronic infections increases the costs by 69.9-163.5% (A$12,852-A$30,047 for the hypothetical patient) depending on the type of infection. The type of CF genetic mutation and the patient's age both have significant effects on the costs. In particular, being homozygous for p.F508del increases the costs by 26.8% compared to all the other gene mutations. We conclude that bacterial infections have a very strong influence on the costs, so reducing both the infection rates and the severity of the condition may lead to substantial cost savings. We also suggest that the patient's genetic profile should be considered as an important cost determinant. PMID:25106736

  14. A review of school mental health programs in SAMHSA's national registry of evidence-based programs and practices.

    PubMed

    George, Melissa; Taylor, Leslie; Schmidt, Sara C; Weist, Mark D

    2013-05-01

    OBJECTIVE School programs provided by the Substance Abuse and Mental Health Services Administration's National Registry of Evidence-Based Programs and Practices (NREPP) were reviewed to describe program characteristics, costs, and ratings of research and dissemination. METHODS Data were gathered from the NREPP to identify mental health programs adaptable for schools. Program costs and quality and dissemination ratings were examined as a function of program characteristics. RESULTS School mental health programs constituted 32% of the registry, with 44% providing only materials at cost and 46% providing universal mental health promotion rather than intensive supports. Readiness for dissemination was poorer for programs providing only intensive supports, and quality of research increased as total costs of program implementation increased. CONCLUSIONS Mechanisms for tracking mental health promotion and treatment can be effective in disseminating information about evidence-based school programming. Assessing program transportability is necessary for decision making to match programs with the needs of particular schools and communities. PMID:23632576

  15. The National Cardiovascular Data Registry Voluntary Public Reporting Program: An Interim Report From the NCDR Public Reporting Advisory Group.

    PubMed

    Dehmer, Gregory J; Jennings, Jonathan; Madden, Ruth A; Malenka, David J; Masoudi, Frederick A; McKay, Charles R; Ness, Debra L; Rao, Sunil V; Resnic, Frederic S; Ring, Michael E; Rumsfeld, John S; Shelton, Marc E; Simanowith, Michael C; Slattery, Lara E; Weintraub, William S; Lovett, Ann; Normand, Sharon-Lise

    2016-01-19

    Public reporting of health care data continues to proliferate as consumers and other stakeholders seek information on the quality and outcomes of care. Medicare's Hospital Compare website, the U.S. News & World Report hospital rankings, and several state-level programs are well known. Many rely heavily on administrative data as a surrogate to reflect clinical reality. Clinical data are traditionally more difficult and costly to collect, but more accurately reflect patients' clinical status, thus enhancing the validity of quality metrics. We describe the public reporting effort being launched by the American College of Cardiology and partnering professional organizations using clinical data from the National Cardiovascular Data Registry (NCDR) programs. This hospital-level voluntary effort will initially report process of care measures from the percutaneous coronary intervention (CathPCI) and implantable cardioverter-defibrillator (ICD) registries of the NCDR. Over time, additional process, outcomes, and composite performance metrics will be reported. PMID:26603176

  16. [The IRIS® Registry : Purpose and perspectives. German Version].

    PubMed

    Parke Ii, D W; Lum, F; Rich, W L

    2016-06-01

    The American Academy of Ophthalmology IRIS® Registry (Intelligent Research in Sight) launched about 2 years ago and has already become the largest national clinical specialty data registry with nearly 50 million patient visits and over 14 million unique patients. The purpose of the registry is to support and promote continued improvement in the delivery of eye care. The perspectives that "big data" encompass are the key issues facing ophthalmology and eye care, including public health and public policy concerning disease incidence and prevalence, utilization of eye care services, natural history of disease, disease surveillance, comparative effectiveness, safety and adverse event monitoring, compliance with "best practices" and clinical guidelines, etc. The valuable real-world and current-day insights provided by the IRIS Registry and other registries like it will accelerate scientific learning and improvements in care delivery, particularly in a cost-constrained environment. PMID:27277752

  17. Lessons from 30 years' data of Korean end-stage renal disease registry, 1985-2015.

    PubMed

    Jin, Dong-Chan; Yun, Sung Ro; Lee, Seoung Woo; Han, Sang Woong; Kim, Won; Park, Jongha; Kim, Yong Kyun

    2015-09-01

    The Korean Society of Nephrology (KSN) launched a nationwide official survey program about dialysis therapy in 1985. Nowadays, the accumulated data for 30 years by this "Insan Prof. Min Memorial end-stage renal disease (ESRD) Registry" program have been providing the essential information for dialysis clinical practice, academic nephrology research, and health management policy. We reviewed 30 years of data to identify important changes and implications for the future improvement of dialysis therapy in Korea. Hemodialysis patients, especially diabetics and elderly patients have increased in number very rapidly during recent years in Korea. The Korean prevalence rate of ESRD patients was about 70% of the United States and about 50% of Japan according to the international comparisons in the annual data report of United States Renal Data System. The blood pressure control, anemia control, and dialysis adequacy have continuously improved year by year. The importance of calcium and phosphorus control has also been increasing because of the increase in long-term dialysis patients. In addition, chronic dialysis complications should be closely monitored and dialysis modifications, such as hemodiafiltration therapy, might be considered. Because of the increase of private clinics and nursing hospitals in dialysis practice, the role of dialysis specialists and continuing education are thought to be essential. For strict cost-effective dialysis control of increasing elderly, diabetic, and long-term dialysis patients, the KSN ESRD patient registration should be run by the KSN and health ministry in cooperation, in which the dialysis fee reimbursement should be accompanied. PMID:26484037

  18. Major changes and improvements of dialysis therapy in Korea: review of end-stage renal disease registry.

    PubMed

    Jin, Dong Chan

    2015-01-01

    The Korean Society of Nephrology (KSN) launched a nationwide end-stage renal disease (ESRD) patient registry in 1985 called the Insan Prof. Byung-Suk Min Memorial ESRD Patient Registry. KSN members voluntarily participate in this registry, which has been collecting data through the Internet since 2000. The KSN ESRD patient registry data were reviewed to elucidate the major changes and improvements in dialysis therapy in Korea. The data review revealed: a rapid increase in the number of patients with ESRD; an increase in the number of patients with diabetic nephropathy; a decrease in the proportion of patients undergoing peritoneal dialysis; an increase in the role of private dialysis clinics; an increase in the number of elderly patients undergoing dialysis and the number of patients undergoing long-term dialysis; a decrease in mean blood pressure and an increase in pulse pressure; improvement in anemia treatment; improvement in dialysis adequacy; and improvement in the survival of patients undergoing dialysis. In conclusion, improvements have been made in blood pressure control, anemia treatment, and dialysis adequacy despite increases in the number of elderly patients, diabetic patients, and patients on long-term dialysis during the last two decades in Korea. PMID:25589829

  19. Health-Related Quality of Life (HRQoL) in alopecia areata patients-a secondary analysis of the National Alopecia Areata Registry Data.

    PubMed

    Shi, Qiuling; Duvic, Madeleine; Osei, Joyce S; Hordinsky, Maria K; Norris, David A; Price, Vera H; Amos, Christopher I; Christiano, Angela M; Mendoza, Tito R

    2013-12-01

    Alopecia areata (AA) is a nonscarring and recurrent disease characterized by hair loss that may significantly affect patient health-related quality of life (HRQoL). Given the lack of reliable and accurate reporting of HRQoL status in patients with AA, we analyzed data from 532 AA patients from the National Alopecia Areata Registry whose registry record included HRQoL assessments using three validated instruments: Skindex-16, brief version of the Fear of Negative Evaluation Scale, and Dermatology Life Quality Index. The mean HRQoL scores were compared with previously reported HRQoL levels from healthy controls and patients with other skin diseases. Two-step cluster analysis of Skindex-16 scales divided patients into two groups: 481 (57%) with good HRQoL and 361 (43%) with poor HRQoL. Multivariate logistic regression modeling revealed a set of risk factors for poor HRQoL: age <50 years (odds ratio (OR) 3.99, 95% confidence interval (CI) 1.66-9.58), female gender (OR 2.74, 95% CI 1.73-4.34), hair loss 25-99% (OR 2.47, 95% CI 1.12-5.45), family stress (OR 1.8, 95% CI 1.13-2.86), and job change (OR 2.01, 95% CI 1.02-3.94). The current analysis provides an overview of the HRQoL status of AA patients and may guide patient care in the future. PMID:24326555

  20. Are Cancer Registries Unconstitutional?

    PubMed Central

    McLaughlin, Robert H; Clarke, Christina A; Crawley, LaVera M; Glaser, Sally L

    2010-01-01

    Population-based cancer registration, mandated throughout the United States, is central to quantifying the breadth and impact of cancer. It facilitates research to learn what causes cancer to develop and, in many cases, lead to death. However, as concerns about privacy increase, cancer registration has come under question. Recently, its constitutionality was challenged on the basis of 1) the vagueness of statutory aims to pursue public health versus the individual privacy interests of cancer patients, and 2) the alleged indignity of one's individual medical information being transmitted to government authorities. Examining cancer registry statutes in states covered by the US National Cancer Institute's SEER Program and the US Centers for Disease Control and Prevention's National Program of Cancer Registries, we found that cancer registration laws do state specific public health benefits, and offer reasonable limits and safeguards on the government's possession of private medical information. Thus, we argue that cancer registration would survive constitutional review, is compatible with the civil liberties protected by privacy rights in the U.S., satisfies the conditions that justify public health expenditures, and serves human rights to enjoy the highest attainable standards of health, the advances of science, and the benefits of government efforts to prevent and control disease. PMID:20199835

  1. Are all metal-on-metal hip revision operations contributing to the National Joint Registry implant survival curves?

    PubMed Central

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

    2016-01-01

    Aims 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. Methods 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. Results 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. Discussion 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. Take home message: Prospective Registry – retrieval linkage is a simple tool to evaluate and improve data quality on the NJR. Cite this article: Bone Joint J 2016;98-B:33–9. PMID:26733513

  2. Supplement use by women during pregnancy: data from the Massachusetts General Hospital National Pregnancy Registry for Atypical Antipsychotics.

    PubMed

    Freeman, Marlene P; Sosinsky, Alexandra Z; Moustafa, Danna; Viguera, Adele C; Cohen, Lee S

    2016-06-01

    Women of reproductive age commonly use integrative treatments. However, the reproductive safety for most complementary products lacks systematic study. We aimed to study the use of supplements by women in a prospective pregnancy registry. The Massachusetts General Hospital National Pregnancy Registry for Atypical Antipsychotics was established to evaluate the reproductive safety of atypical antipsychotics. Exposed and control participants were systematically queried about the use of vitamins and supplements. Slightly greater than half (53.2 %) of the participants eligible for analysis (N = 534) were using at least one vitamin or supplement at the time of enrollment, not including prenatal vitamins or folic acid. The most common supplements used were omega-3 fatty acids (38.0 %), vitamin D (11.0 %), calcium (8.2 %), and iron (4.7 %). Probiotics and melatonin were used by 2.6 and 0.9 %, respectively. In this prospective pregnancy registry, we found that over half of the participants were taking supplements or vitamins other than prenatal vitamins and folic acid. These findings underscore the need for active query on the part of health care providers about the use of supplements during pregnancy, and the need to obtain rigorous reproductive safety and efficacy data for supplements used by pregnant women and reproductive aged women. PMID:26472040

  3. Dengue in Malaysia: Factors Associated with Dengue Mortality from a National Registry

    PubMed Central

    Suli, Zailiza; Mudin, Rose Nani; Goh, Pik Pin; Chinna, Karuthan

    2016-01-01

    Background The increasing incidence and geographical distribution of dengue has had significant impact on global healthcare services and resources. This study aimed to determine the factors associated with dengue-related mortality in a cohort of Malaysian patients. Methods This was a retrospective cohort study of patients in the Malaysian National Dengue Registry of 2013. The outcome measure was dengue-related mortality. Associations between sociodemographic and clinical variables with the outcome were analysed using multivariate analysis. Results There were 43 347 cases of which 13081 were serologically confirmed. The mean age was 30.0 years (SD 15.7); 60.2% were male. The incidence of dengue increased towards the later part of the calendar year. There were 92 probable dengue mortalities, of which 41 were serologically confirmed. Multivariate analysis in those with positive serology showed that increasing age (OR 1.03; CI:1.01–1.05), persistent vomiting (OR 13.34; CI: 1.92–92.95), bleeding (OR 5.84; CI 2.17–15.70) and severe plasma leakage (OR 66.68; CI: 9.13–487.23) were associated with mortality. Factors associated with probable dengue mortality were increasing age (OR 1.04; CI:1.03–1.06), female gender (OR 1.53; CI:1.01–2.33), nausea and/or vomiting (OR 1.80; CI:1.17–2.77), bleeding (OR 3.01; CI:1.29–7.04), lethargy and/or restlessness (OR 5.97; CI:2.26–15.78), severe plasma leakage (OR 14.72; CI:1.54–140.70), and shock (OR 1805.37; CI:125.44–25982.98), in the overall study population. Conclusions Older persons and those with persistent vomiting, bleeding or severe plasma leakage, which were associated with mortality, at notification should be monitored closely and referred early if indicated. Doctors and primary care practitioners need to detect patients with dengue early before they develop these severe signs and symptoms. PMID:27336440

  4. 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

  5. Cancer incidence among alcoholic liver disease patients in Finland: A retrospective registry study during years 1996-2013.

    PubMed

    Sahlman, Perttu; Nissinen, Markku; Pukkala, Eero; Färkkilä, Martti

    2016-06-01

    Both alcohol abuse and liver cirrhosis are known risk factors for various cancers. This article was aimed to assess the long-term risk of malignancies among patients with severe alcoholic liver disease (ALD), i.e., alcoholic liver cirrhosis and alcoholic hepatitis. A cohort of 8,796 male and 3,077 female ALD patients from 1996 to 2012 was identified from the Finnish National Hospital Discharge Register. This nationwide cohort was combined with the data from the Finnish Cancer Registry for incidence of malignancies during the years 1996-2013. The cancer cases diagnosed were compared with the number of cancers in the general population. The number of malignancies in our cohort was 1,052 vs. 368 expected. There was statistically significant excess of cancers of the liver, (standardized incidence ratio [SIR] 59.20; 95% CI 53.11-65.61), pancreas (SIR 3.71; 95% CI 2.72-4.94), pharynx (SIR 9.25; 95% CI 6.05-13.56), mouth (SIR 8.31; 95% CI 4.84-13,29), oesophagus (SIR 7.92; 95% CI 5.49-11.07), tongue (SIR 7,21; 95% CI 3.60-12.89), larynx (SIR 5.20; 95% CI 2.77-8.89), lung (SIR 2.77; 95% CI 2.27-3.32), stomach (SIR 2.76; 95% CI 1.79-4.07), kidney (SIR 2.69; 95% CI 1.84-3.79) and colon (SIR 2.33; 95% CI 1.70-3.11). There was no decreased risk of any cancer among ALD patients. Severe ALD is associated with markedly increased risk of malignancies. The risk is especially high for hepatocellular carcinoma, but also significantly increased for cancers of the upper aerodigestive tract, pancreas and kidneys, and warrants cancer surveillance in selected cases. PMID:26756434

  6. Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford

    ClinicalTrials.gov

    2016-09-01

    Rare Disorders; Undiagnosed Disorders; Disorders of Unknown Prevalence; Cornelia De Lange Syndrome; Prenatal Benign Hypophosphatasia; Perinatal Lethal Hypophosphatasia; Odontohypophosphatasia; Adult Hypophosphatasia; Childhood-onset Hypophosphatasia; Infantile Hypophosphatasia; Hypophosphatasia; Kabuki Syndrome; Bohring-Opitz Syndrome; Narcolepsy Without Cataplexy; Narcolepsy-cataplexy; Hypersomnolence Disorder; Idiopathic Hypersomnia Without Long Sleep Time; Idiopathic Hypersomnia With Long Sleep Time; Idiopathic Hypersomnia; Kleine-Levin Syndrome; Kawasaki Disease; Leiomyosarcoma; Leiomyosarcoma of the Corpus Uteri; Leiomyosarcoma of the Cervix Uteri; Leiomyosarcoma of Small Intestine; Acquired Myasthenia Gravis; Addison Disease; Hyperacusis (Hyperacousis); Juvenile Myasthenia Gravis; Transient Neonatal Myasthenia Gravis; Williams Syndrome; Lyme Disease; Myasthenia Gravis; Marinesco Sjogren Syndrome(Marinesco-Sjogren Syndrome); Isolated Klippel-Feil Syndrome; Frasier Syndrome; Denys-Drash Syndrome; Beckwith-Wiedemann Syndrome; Emanuel Syndrome; Isolated Aniridia; Beckwith-Wiedemann Syndrome Due to Paternal Uniparental Disomy of Chromosome 11; Beckwith-Wiedemann Syndrome Due to Imprinting Defect of 11p15; Beckwith-Wiedemann Syndrome Due to 11p15 Translocation/Inversion; Beckwith-Wiedemann Syndrome Due to 11p15 Microduplication; Beckwith-Wiedemann Syndrome Due to 11p15 Microdeletion; Axenfeld-Rieger Syndrome; Aniridia-intellectual Disability Syndrome; Aniridia - Renal Agenesis - Psychomotor Retardation; Aniridia - Ptosis - Intellectual Disability - Familial Obesity; Aniridia - Cerebellar Ataxia - Intellectual Disability; Aniridia - Absent Patella; Aniridia; Peters Anomaly - Cataract; Peters Anomaly; Potocki-Shaffer Syndrome; Silver-Russell Syndrome Due to Maternal Uniparental Disomy of Chromosome 11; Silver-Russell Syndrome Due to Imprinting Defect of 11p15; Silver-Russell Syndrome Due to 11p15 Microduplication; Syndromic Aniridia; WAGR Syndrome; Wolf

  7. RD-Connect: an integrated platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research.

    PubMed

    Thompson, Rachel; Johnston, Louise; Taruscio, Domenica; Monaco, Lucia; Béroud, Christophe; Gut, Ivo G; Hansson, Mats G; 't Hoen, Peter-Bram A; Patrinos, George P; Dawkins, Hugh; Ensini, Monica; Zatloukal, Kurt; Koubi, David; Heslop, Emma; Paschall, Justin E; Posada, Manuel; Robinson, Peter N; Bushby, Kate; Lochmüller, Hanns

    2014-08-01

    Research into rare diseases is typically fragmented by data type and disease. Individual efforts often have poor interoperability and do not systematically connect data across clinical phenotype, genomic data, biomaterial availability, and research/trial data sets. Such data must be linked at both an individual-patient and whole-cohort level to enable researchers to gain a complete view of their disease and patient population of interest. Data access and authorization procedures are required to allow researchers in multiple institutions to securely compare results and gain new insights. Funded by the European Union's Seventh Framework Programme under the International Rare Diseases Research Consortium (IRDiRC), RD-Connect is a global infrastructure project initiated in November 2012 that links genomic data with registries, biobanks, and clinical bioinformatics tools to produce a central research resource for rare diseases. PMID:25029978

  8. JBEI Registry

    SciTech Connect

    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.

  9. Smallpox Disease Images

    MedlinePlus

    ... Case Definition: Caustic or Corrosive Agents Incapacitating Agents Metals Nerve ... Center for Environmental Health (NCEH) / Agency for Toxic Substances and Disease Registry (ATSDR) , National Center for Injury ...

  10. Effects of Renal Denervation Documented in the Austrian National Multicentre Renal Denervation Registry

    PubMed Central

    Lambert, Thomas; Steinwender, Clemens; Weber, Thomas; Suppan, Markus; Brussee, Helmut; Koppelstätter, Christian; Kerschbaum, Julia; Watschinger, Bruno; Hohenstein-Scheibenecker, Katharina; Reindl-Schwaighofer, Roman; Sturmberger, Thomas; Kindslehner, Claudia; Weiss, Thomas Werner; Rohla, Miklos; Gruener, Peter; Maister, Petra; Auer, Johann; Dechant, Cornelia; Sykora, Josef; Krismer, Christoph; Glaser, Stefan; Zweiker, Robert

    2016-01-01

    Renal denervation (RDN) is a new procedure for treatment-resistant hypertensive patients. In order to monitor all procedures undergone in Austria, the Austrian Society of Hypertension established the investigator-initiated Austrian Transcatheter Renal Denervation (TREND) Registry. From April 2011 to September 2014, 407 procedures in 14 Austrian centres were recorded. At baseline, office and mean 24-h ambulatory blood pressure (ABP) were 171/94 and 151/89 mmHg, respectively, and patients were taking a median of 4 antihypertensive medications. Mean 24-h ABP changes after 2–6 weeks, 3, 6 and 12 months were -11/-6, -8/-4, -8/-5 and -10/-6 mmHg (p<0.05 at all measurements), respectively. The periprocedural complication rate was 2.5%. Incidence of long-term complications during follow-up (median 1 year) was 0.5%. Office BP and ABP responses showed only a weak correlation (Pearson coefficient 0.303). Based on the data from the TREND registry, ambulatory blood pressure monitoring in addition to office BP should be used for patient selection as well as for monitoring response to RDN. Furthermore, criteria for optimal patient selection are suggested. PMID:27529426

  11. Effects of Renal Denervation Documented in the Austrian National Multicentre Renal Denervation Registry.

    PubMed

    Zweiker, David; Lambert, Thomas; Steinwender, Clemens; Weber, Thomas; Suppan, Markus; Brussee, Helmut; Koppelstätter, Christian; Kerschbaum, Julia; Watschinger, Bruno; Hohenstein-Scheibenecker, Katharina; Reindl-Schwaighofer, Roman; Sturmberger, Thomas; Kindslehner, Claudia; Weiss, Thomas Werner; Rohla, Miklos; Gruener, Peter; Maister, Petra; Auer, Johann; Dechant, Cornelia; Sykora, Josef; Krismer, Christoph; Glaser, Stefan; Zweiker, Robert

    2016-01-01

    Renal denervation (RDN) is a new procedure for treatment-resistant hypertensive patients. In order to monitor all procedures undergone in Austria, the Austrian Society of Hypertension established the investigator-initiated Austrian Transcatheter Renal Denervation (TREND) Registry. From April 2011 to September 2014, 407 procedures in 14 Austrian centres were recorded. At baseline, office and mean 24-h ambulatory blood pressure (ABP) were 171/94 and 151/89 mmHg, respectively, and patients were taking a median of 4 antihypertensive medications. Mean 24-h ABP changes after 2-6 weeks, 3, 6 and 12 months were -11/-6, -8/-4, -8/-5 and -10/-6 mmHg (p<0.05 at all measurements), respectively. The periprocedural complication rate was 2.5%. Incidence of long-term complications during follow-up (median 1 year) was 0.5%. Office BP and ABP responses showed only a weak correlation (Pearson coefficient 0.303). Based on the data from the TREND registry, ambulatory blood pressure monitoring in addition to office BP should be used for patient selection as well as for monitoring response to RDN. Furthermore, criteria for optimal patient selection are suggested. PMID:27529426

  12. My Retina Tracker™: An On-line International Registry for People Affected with Inherited Orphan Retinal Degenerative Diseases and their Genetic Relatives - A New Resource.

    PubMed

    Fisher, Joan K; Bromley, Russell L; Mansfield, Brian C

    2016-01-01

    My Retina Tracker™ is a new on-line registry for people affected with inherited orphan retinal degenerative diseases, and their unaffected, genetic relatives. Created and supported by the Foundation Fighting Blindness, it is an international resource designed to capture the disease from the perspective of the registry participant and their retinal health care providers. The registry operates under an Institutional Review Board (IRB)-approved protocol and allows sharing of de-identified data with participants, researchers and clinicians. All participants sign an informed consent that includes selecting which data they wish to share. There is no minimum age of participation. Guardians must sign on behalf of minors, and children between the ages of 12 to 17 also sign an informed assent. Participants may compare their disease to others in the registry using graphical interpretations of the aggregate registry data. Researchers and clinicians have two levels of access. The first provides an interface to interrogate all data fields registrants have agreed to share based on their answers in the IRB informed consent. The second provides a route to contact people in the registry who may be eligible for studies or trials, through the Foundation. PMID:26427418

  13. Exploring Clinical and Epidemiological Characteristics of Interstitial Lung Diseases: Rationale, Aims, and Design of a Nationwide Prospective Registry—The EXCITING-ILD Registry

    PubMed Central

    Kreuter, Michael; Herth, Felix J. F.; Wacker, Margarethe; Leidl, Reiner; Hellmann, Andreas; Pfeifer, Michael; Behr, Jürgen; Witt, Sabine; Kauschka, Dagmar; Mall, Marcus; Günther, Andreas; Markart, Philipp

    2015-01-01

    Despite a number of prospective registries conducted in past years, the current epidemiology of interstitial lung diseases (ILD) is still not well defined, particularly regarding the prevalence and incidence, their management, healthcare utilisation needs, and healthcare-associated costs. To address these issues in Germany, a new prospective ILD registry, “Exploring Clinical and Epidemiological Characteristics of Interstitial Lung Diseases” (EXCITING-ILD), is being conducted by the German Centre for Lung Research in association with ambulatory, inpatient, scientific pulmonology organisations and patient support groups. This multicentre, noninterventional, prospective, and observational ILD registry aims to collect comprehensive and validated data from all healthcare institutions on the incidence, prevalence, characteristics, management, and outcomes regarding all ILD presentations in the real-world setting. Specifically, this registry will collect demographic data, disease-related data such as ILD subtype, treatments, diagnostic procedures (e.g., HRCT, surgical lung biopsy), risk factors (e.g., familial ILD), significant comorbidities, ILD managements, and disease outcomes as well as healthcare resource consumption. The EXCITING-ILD registry will include in-patient and out-patient ILD healthcare facilities in more than 100 sites. In summary, this registry will document comprehensive and current epidemiological data as well as important health economic data for ILDs in Germany. PMID:26640781

  14. [Ph-negative myeloproliferative diseases with thrombocythemia in the context of Thromboreductin® treatment, data from registry 2013].

    PubMed

    Penka, Miroslav; Schwarz, Jiří; Ovesná, Petra; Cervinek, Libor; Dulíček, Petr; Pospíšilová, Dagmar; Kissová, Jarmila; Pavlík, Tomáš

    2014-01-01

    Czech Working Group for Ph-negative Myeloproliferative diseases (CZEMP) recommends anagrelid (Thromboreductin®) for the treatment of Ph-negative chronic myeloproliferative disease (MPO) with thrombocythemia accompanying. To evaluate the efficacy of this treatment, the patient registry with essential thrombocythemia and/or thrombocytosis accompanying other Ph-negative myeloproliferative diseases was established. The beginnings of data collection go back to 2001, registry itself is maintained from 2005 and the aim is to archive the medical records with detailed physical and laboratory examination, safety patient profile included. The longest follow-up monitors 150 months period. Registry database contained 1,325 patients in the end of 2013, with an annual increase of anagrelid therapy as a drug of first choice in accordance with CZEMP guidelines approved by the Czech Society of Hematology of Czech Medical Association of J. E. Purkyne. Indication criteria contribute to this trend as anagrelid is the first choice agent in 65 years old patients, instead previous 60 years of age. Often, we can observe the combined treatment, especially, in older patients and in patients with primary myelofibrosis and polycythemia vera. There have been founded 543 thrombotic events in 413 patients and 63 bleeding events in 58 patients of study group by the end of 2013. During treatment, thrombosis was diagnosed 225 times in 171 patients and bleeding was observed 139 times in 104 patients. The therapeutic response is achieved after 3 months in 77% and after 6 months in 83% of subjects, but after 12 months, the treatment still fails in 12,5% of patients. It might be caused by slow titration of Thromboreductin®. One of the most important indicators of treatment success is the effect on clinical symptoms presentation, especially the occurrence of thrombotic events. The proof of a good treatment efficacy is demonstrated by 1.8 fold decrease in arterial thrombosis, more than 1.5 fold decrease

  15. Update to agency for toxic substances and disease registry 2012 report on assessment of biota exposure to mercury originating from Savannah River Site.

    SciTech Connect

    Kuhne, W.

    2015-08-10

    The purpose of this report is to 1) update previous Savannah River National Laboratory (SRNL) assessment reports (Kvartek et al. 1994 and Halverson et al. 2008) on the fate of mercury in the Savannah River Site (SRS) environment and 2) address comments and recommendations from the review of SRS by the Agency for Toxic Substances and Disease Registry (ATSDR) concerning the evaluation of exposures to contaminants in biota originating from the SRS. The ATSDR reviewed and evaluated data from SRS, South Carolina Department of Health & Environmental Control (SCDHEC) and the Georgia Department of Natural Resources (GDNR) concerning the non-radioactive contaminant mercury. This report will provide a response and update to conclusions and recommendations made by the ATSDR.

  16. Incidence of Congenital Heart Disease: The 9-Year Experience of the Guangdong Registry of Congenital Heart Disease, China

    PubMed Central

    Zhuang, Jian; Chen, Guanchun; Mai, Jinzhuang; Guo, Xiaoling; Ou, Yanqiu; Chen, Jimei; Gong, Wei; Gao, Xiangmin; Wu, Yong; Nie, Zhiqiang

    2016-01-01

    There are 16.5 million newborns in China annually. However, the incidence of congenital heart disease (CHD) has not been evaluated. In 2004, we launched an active province-wide hospital-based CHD registry in the Guangdong Province of southern China. In this study, we examined the incidence of CHD and its subtypes from 2004 to 2012 and compared our findings to the literature. Our results indicate there is an increasing trend of CHD incidence. The increase in incidence occurred mainly for single lesion and the most common subtypes (e.g., ventricular or atrial septal defect, patent ductus arteriosus). There were no increases found for multiple lesions or more complex subtypes. The proportion of CHD cases that were detected early (e.g., 1 week) increased over time. The incidence of CHD stabilized in 2010–2012 with the average cumulative incidences of 9.7, 9.9, and 11.1 per 1,000 live births at 1 week, 1 month, and 1 year, respectively. The incidences of CHD subtypes were comparable with recent international results. The data did not support previous reports that Asian children have a higher incidence of pulmonary outflow obstructions and lower incidence of transposition of the great arteries. However, there was a lower incidence of left ventricular outflow tract obstructions observed in our series. The increase in CHD incidence observed over time was due to improved detection and diagnosis. The true incidence of CHD in China was approximately 11.1 per 1,000 live births, which is higher than previously reported. PMID:27409588

  17. Incidence of Congenital Heart Disease: The 9-Year Experience of the Guangdong Registry of Congenital Heart Disease, China.

    PubMed

    Qu, Yanji; Liu, Xiaoqing; Zhuang, Jian; Chen, Guanchun; Mai, Jinzhuang; Guo, Xiaoling; Ou, Yanqiu; Chen, Jimei; Gong, Wei; Gao, Xiangmin; Wu, Yong; Nie, Zhiqiang

    2016-01-01

    There are 16.5 million newborns in China annually. However, the incidence of congenital heart disease (CHD) has not been evaluated. In 2004, we launched an active province-wide hospital-based CHD registry in the Guangdong Province of southern China. In this study, we examined the incidence of CHD and its subtypes from 2004 to 2012 and compared our findings to the literature. Our results indicate there is an increasing trend of CHD incidence. The increase in incidence occurred mainly for single lesion and the most common subtypes (e.g., ventricular or atrial septal defect, patent ductus arteriosus). There were no increases found for multiple lesions or more complex subtypes. The proportion of CHD cases that were detected early (e.g., 1 week) increased over time. The incidence of CHD stabilized in 2010-2012 with the average cumulative incidences of 9.7, 9.9, and 11.1 per 1,000 live births at 1 week, 1 month, and 1 year, respectively. The incidences of CHD subtypes were comparable with recent international results. The data did not support previous reports that Asian children have a higher incidence of pulmonary outflow obstructions and lower incidence of transposition of the great arteries. However, there was a lower incidence of left ventricular outflow tract obstructions observed in our series. The increase in CHD incidence observed over time was due to improved detection and diagnosis. The true incidence of CHD in China was approximately 11.1 per 1,000 live births, which is higher than previously reported. PMID:27409588

  18. National Hansen's Disease (Leprosy) Program

    MedlinePlus

    ... its facility at the Ochsner Medical Center in Baton Rouge. Oversees an ambulatory care network with clinics throughout ... National Hansen's Disease Programs 1770 Physicians Park Drive Baton Rouge, Louisiana 70816 1-800-642-2477 Online Courses ...

  19. Worldwide variability in deceased organ donation registries

    PubMed Central

    Rosenblum, Amanda M; Li, Alvin Ho-Ting; Roels, Leo; Stewart, Bryan; Prakash, Versha; Beitel, Janice; Young, Kimberly; Shemie, Sam; Nickerson, Peter; Garg, Amit X

    2012-01-01

    The variability in deceased organ donation registries worldwide has received little attention. We considered all operating registries, where individual wishes about organ donation were recorded in a computerized database. We included registries which recorded an individual's decision to be a donor (donor registry), and registries which only recorded an individual's objection (non-donor registry). We collected information on 15 characteristics including history, design, use and number of registrants for 27 registries (68%). Most registries are nationally operated and government-owned. Registrations in five nations expire and require renewal. Some registries provide the option to make specific organ selections in the donation decision. Just over half of donor registries provide legally binding authorization to donation. In all national donor registries, except one, the proportion of adults (15+) registered is modest (<40%). These proportions can be even lower when only affirmative decisions are considered. One nation provides priority status on the transplant waiting list as an incentive to affirmative registration, while another nation makes registering a donation decision mandatory to obtain a driver's license. Registered objections in non-donor registries are rare (<0.5%). The variation in organ donor registries worldwide necessitates public discourse and quality improvement initiatives, to identify and support leading practices in registry use. PMID:22507140

  20. Worldwide variability in deceased organ donation registries.

    PubMed

    Rosenblum, Amanda M; Li, Alvin Ho-Ting; Roels, Leo; Stewart, Bryan; Prakash, Versha; Beitel, Janice; Young, Kimberly; Shemie, Sam; Nickerson, Peter; Garg, Amit X

    2012-08-01

    The variability in deceased organ donation registries worldwide has received little attention. We considered all operating registries, where individual wishes about organ donation were recorded in a computerized database. We included registries which recorded an individual's decision to be a donor (donor registry), and registries which only recorded an individual's objection (non-donor registry). We collected information on 15 characteristics including history, design, use and number of registrants for 27 registries (68%). Most registries are nationally operated and government-owned. Registrations in five nations expire and require renewal. Some registries provide the option to make specific organ selections in the donation decision. Just over half of donor registries provide legally binding authorization to donation. In all national donor registries, except one, the proportion of adults (15+) registered is modest (<40%). These proportions can be even lower when only affirmative decisions are considered. One nation provides priority status on the transplant waiting list as an incentive to affirmative registration, while another nation makes registering a donation decision mandatory to obtain a driver's license. Registered objections in non-donor registries are rare (<0.5%). The variation in organ donor registries worldwide necessitates public discourse and quality improvement initiatives, to identify and support leading practices in registry use. PMID:22507140

  1. Trimming Exposure Data, Putting Radiation Workers at Risk: Improving Disclosure and Consent Through a National Radiation Dose-Registry

    PubMed Central

    Shrader-Frechette, Kristin

    2007-01-01

    In the United States, regulatory standards allow workers to be exposed to ionizing radiation that can cause 1 additional cancer fatality per 400 workers per year. Because radiation-dose limits cover only single sources (e.g., a nuclear plant) or exposure classes (workplace, medical, or public) and are defined for average occupational exposure, workers typically do not know their precise cumulative, individual, and relative risks from radiation. Nevertheless, this information is necessary for informed consent, because most scientists say radiation effects are cumulative and linear with no risk threshold. To promote public health, informed consent, and better understanding of the effects of low-dose radiation, I argue for a multistage National Radiation-Dose Registry, beginning with cumulative, individual worker doses. PMID:17761581

  2. European cardiovascular magnetic resonance (EuroCMR) registry – multi national results from 57 centers in 15 countries

    PubMed Central

    2013-01-01

    Abstract Background The EuroCMR registry sought to evaluate indications, image quality, safety and impact on patient management of clinical routine CMR in a multi-national European setting. Furthermore, interim analysis of the specific protocols should underscore the prognostic potential of CMR. Methods Multi-center registry with consecutive enrolment of patients in 57 centers in 15 countries. More than 27000 consecutive patients were enrolled. Results The most important indications were risk stratification in suspected CAD/Ischemia (34.2%), workup of myocarditis/cardiomyopathies (32.2%), as well as assessment of viability (14.6%). Image quality was diagnostic in more than 98% of cases. Severe complications occurred in 0.026%, always associated with stress testing. No patient died during or due to CMR. In 61.8% CMR findings impacted on patient management. Importantly, in nearly 8.7% the final diagnosis based on CMR was different to the diagnosis before CMR, leading to a complete change in management. Interim analysis of suspected CAD and risk stratification in HCM specific protocols revealed a low rate of adverse events for suspected CAD patients with normal stress CMR (1.0% per year), and for HCM patients without LGE (2.7% per year). Conclusion The most important indications in Europe are risk stratification in suspected CAD/Ischemia, work-up of myocarditis and cardiomyopathies, as well as assessment of viability. CMR imaging is a safe procedure, has diagnostic image quality in more than 98% of cases, and its results have strong impact on patient management. Interim analyses of the specific protocols underscore the prognostic value of clinical routine CMR in CAD and HCM. Condensed abstract The EuroCMR registry sought to evaluate indications, image quality, safety and impact on patient management of clinical routine CMR in a multi-national European setting in a large number of cases (n > 27000). Based on our data CMR is frequently performed in European

  3. Use of Anticoagulants and Antiplatelet Agents in Stable Outpatients with Coronary Artery Disease and Atrial Fibrillation. International CLARIFY Registry

    PubMed Central

    Fauchier, Laurent; Greenlaw, Nicola; Ferrari, Roberto; Ford, Ian; Fox, Kim M.; Tardif, Jean-Claude; Tendera, Michal; Steg, Ph. Gabriel

    2015-01-01

    Background Few data are available regarding the use of antithrombotic strategies in coronary artery disease patients with atrial fibrillation (AF) in everyday practice. We sought to describe the prevalence of AF and its antithrombotic management in a contemporary population of patients with stable coronary artery disease. Methods and Findings CLARIFY is an international, prospective, longitudinal registry of outpatients with stable coronary artery disease, defined as prior (≥12 months) myocardial infarction, revascularization procedure, coronary stenosis >50%, or chest pain associated with evidence of myocardial ischemia. Overall, 33,428 patients were screened, of whom 32,954 had data available for analysis at baseline; of these 2,229 (6.7%) had a history of AF. Median (interquartile range) CHA2DS2-VASc score was 4 (3, 5). Oral anticoagulation alone was used in 25.7%, antiplatelet therapy alone in 52.8% (single 41.8%, dual 11.0%), and both in 21.5%. OAC use was independently associated with permanent AF (p<0.001), CHA2DS2-VASc score (p=0.006), pacemaker (p<0.001), stroke (p=0.04), absence of angina (p=0.004), decreased left ventricular ejection fraction (p<0.001), increased waist circumference (p=0.005), and longer history of coronary artery disease (p=0.008). History of percutaneous coronary intervention (p=0.004) and no/partial reimbursement for cardiovascular medication (p=0.01, p<0.001, respectively) were associated with reduced oral anticoagulant use. Conclusions In this contemporary cohort of patients with stable coronary artery disease and AF, most of whom are theoretical candidates for anticoagulation, oral anticoagulants were used in only 47.2%. Half of the patients received antiplatelet therapy alone and one-fifth received both antiplatelets and oral anticoagulants. Efforts are needed to improve adherence to guidelines in these patients. Trial Registration ISRCTN registry of clinical trials: ISRCTN43070564. PMID:25915904

  4. Frequency of Attainment of Low-Density Lipoprotein Cholesterol and Non-High-Density Lipoprotein Cholesterol Goals in Cardiovascular Clinical Practice (from the National Cardiovascular Data Registry PINNACLE Registry).

    PubMed

    Spinler, Sarah A; Cziraky, Mark J; Willey, Vincent J; Tang, Fengming; Maddox, Thomas M; Thomas, Tyan; Dueñas, Gladys G; Virani, Salim S

    2015-08-15

    Studies have found that non-high-density lipoprotein cholesterol (non-HDL-C) is a superior marker for coronary heart disease compared to low-density lipoprotein cholesterol (LDL-C). Little is known about achievement of non-HDL-C goals outside clinical trials. Within a population of 146,064 patients with dyslipidemia in the PINNACLE Registry and a subgroup of 36,188 patients with diabetes mellitus (DM), we examined the proportion of patients and patient characteristics associated with having LDL-C, non-HDL-C, and both LDL-C and non-HDL-C levels at National Cholesterol Education Program goals. LDL-C, non-HDL-C, and both LDL-C and non-HDL-C goals in the overall cohort were achieved by 73%, 73.4%, and 68.9% patients, respectively. Significant predictors of meeting all 3 goals were age, male gender, statin, nonstatin, and combined statin plus nonstatin use. Patients with co-morbidities of hypertension, previous stroke or transient ischemic attack, peripheral arterial disease, myocardial infarction, and smoking were less likely to have LDL-C, non-HDL-C, and both LDL-C and non-HDL-C levels at National Cholesterol Education Program goal. In the overall cohort, patients with DM were less likely to meet non-HDL-C and both LDL-C and non-HDL-C goals. In the subgroup of patients with DM, predictors of meeting lipid goals were similar to the overall cohort. In conclusion, these data suggest contemporary treatment patterns by cardiologists successfully achieve lipid goals in most patients. Younger, female patients and those with atherosclerotic cardiovascular disease and risk factors, such as hypertension and DM, are less likely to achieve goals and may require more careful follow-up after statin initiation. Both LDL-C and non-HDL-C goals are achieved in <70% of patients, suggesting room for improvement if a goal-targeted individualized strategy is adopted. PMID:26089010

  5. On the Creation, Utility and Sustaining of Rare Diseases Research Networks: Lessons learned from the Urea Cycle Disorders Consortium, the Japanese Urea Cycle Disorders Consortium and the European Registry and Network for Intoxication Type Metabolic Diseases

    PubMed Central

    Summar, Marshall L.; Endo, Fumio; Kölker, Stefan

    2016-01-01

    The past two decades has seen a rapid expansion in the scientific and public interest in rare diseases and their treatment. One consequence of this has been the formation of registries/longitudinal natural history studies for these disorders. Given the expense and effort needed to develop and maintain such programs, we describe our experience with three linked registries on the same disease group, urea cycle disorders. The Urea Cycle Disorders Consortium (UCDC) was formed in the U.S. in 2003 in response to a request for application from the National Institutes of Health (NIH); the European Registry and Network for Intoxication Type Metabolic Diseases (E-IMD) was formed in 2011 in response to a request for applications from the Directorate-General for Health and Consumers (DG SANCO) of the EU; and the Japanese Urea Cycle Disorders Consortium (JUCDC) was founded in 2012 as a sister organization to the UCDC and E-IMD. The functions of these groups are to collect natural history data, educate the professional and lay population, develop and test new treatments, and establish networks of excellence for the care for these disorders. The UCDC and JUCDC focus exclusively on urea cycle disorders while the E-IMD includes patients with urea cycle disorders and organic acidurias. More than 1400 patients have been enrolled in the three consortia, and numerous projects have been developed and joint meetings held including an international UCDC/E-IMD/JUCDC Urea Cycle meeting in Barcelona in 2013. This article summarizes some of the experiences from the three groups regarding formation, funding, and models for sustainability. PMID:25261246

  6. Mortality patterns from lung cancer and nonneoplastic respiratory disease among white males in the Beryllium Case Registry

    SciTech Connect

    Infante, P.F.; Wagoner, J.K.; Sprince, N.L.

    1980-02-01

    Study was undertaken of mortality patterns among white males entered into the Beryllium Case Registry (BCR) while alive with a diagnosis of beryllium-related nonneoplastic respiratory symptoms or disease. Analyses demonstrate an excessive risk of lung cancer among those subjects in the BCR who had been previously diagnosed with acute chemical pneumonitis or bronchitis secondary to short-term beryllium exposure. In the evaluation of the excessive lung cancer risk in this population, consideration should be given to the competing effects from the high case fatality rate of nonneoplastic respiratory disease. This excessive risk of lung cancer could not be explained on the basis of cigarette smoking per se. The findings of the present study utilizing subjects in the BCR are consistent with results of animal studies that over 30 years ago first demonstrated beryllium to be a carcinogen and with numerous epidemiologic studies demonstrating an increased risk of lung cancer among workers occupationally exposed to beryllium and its compounds.

  7. Effect of cigarette smoking on survival of patients with angiographically documented coronary artery disease: report from the CASS registry

    SciTech Connect

    Vlietstra, R.E.; Kronmal, R.A.; Oberman, A.; Frye, R.L.; Killip, T.

    1986-02-28

    Through a multicenter registry of patients in the Coronary Artery Surgery Study, the author prospectively evaluated morbidity and mortality in 4165 smokers with angiographically proved coronary artery disease, 2675 of whom continued to smoke and 1490 of whom quit. At five years, mortality was 22% for those who continued smoking and 15% for quitters. The relative risk for mortality in continuers vs quitters was 1.55. The adverse effect of smoking mainly took the form of higher frequencies of myocardial infarction-associated death and sudden death: the frequencies of these events during follow-up in continuers vs quitters were 7.9% vs 4.4% for myocardial infarction-associated death and 2.8% vs 1.5% for sudden death. This study supports the recommendation that patients with coronary artery disease should stop smoking.

  8. Diabetic Nephropathy and Its Risk Factors in a Society with a Type 2 Diabetes Epidemic: A Saudi National Diabetes Registry-Based Study

    PubMed Central

    Al-Rubeaan, Khalid; Youssef, Amira M.; Subhani, Shazia N.; Ahmad, Najlaa A.; Al-Sharqawi, Ahmad H.; Al-Mutlaq, Hind M.; David, Satish K.; AlNaqeb, Dhekra

    2014-01-01

    Aims The prevalence of diabetic nephropathy and its risk factors have not been studied in a society known to have diabetes epidemic like Saudi Arabia. Using a large data base registry will provide a better understanding and accurate assessment of this chronic complication and its related risk factors. Methodology A total of 54,670 patients with type 2 diabetes aged ≥25 years were selected from the Saudi National Diabetes Registry (SNDR) and analyzed for the presence of diabetic nephropathy. The American Diabetes Association (ADA) criterion was used to identify cases with microalbuminuria, macroalbuminuria and end stage renal disease (ESRD) for prevalence estimation and risk factor assessment. Results The overall prevalence of diabetic nephropathy was 10.8%, divided into 1.2% microalbuminuria, 8.1%macroalbuninuria and 1.5% ESRD. Age and diabetes duration as important risk factors have a strong impact on the prevalence of diabetic nephropathy, ranging from 3.7% in patients aged 25–44 years and a duration of >5 years, to 21.8% in patients ≥65 years with a diabetes duration of ≥15 years. Diabetes duration, retinopathy, neuropathy, hypertension, age >45 years, hyperlipidemia, male gender, smoking, and chronologically, poor glycemic control has a significantly high risk for diabetic nephropathy. Conclusion The prevalence of diabetic nephropathy is underestimated as a result of a shortage of screening programs. Risk factors related to diabetic nephropathy in this society are similar to other societies. There is thus an urgent need for screening and prevention programs for diabetic nephropathy among the Saudi population. PMID:24586457

  9. Breast and Colon Cancer Family Registries

    Cancer.gov

    The Breast Cancer Family Registry and the Colon Cancer Family Registry were established by the National Cancer Institute as a resource for investigators to use in conducting studies on the genetics and molecular epidemiology of breast and colon cancer.

  10. Placental abruption and long-term maternal cardiovascular disease mortality: a population-based registry study in Norway and Sweden.

    PubMed

    DeRoo, Lisa; Skjærven, Rolv; Wilcox, Allen; Klungsøyr, Kari; Wikström, Anna-Karin; Morken, Nils-Halvdan; Cnattingius, Sven

    2016-05-01

    Women with preeclamptic pregnancies have increased long-term cardiovascular disease (CVD) mortality. We explored this mortality risk among women with placental abruption, another placental pathology. We used linked Medical Birth Registry and Death Registry data to study CVD mortality among over two million women with a first singleton birth between 1967 and 2002 in Norway and 1973 and 2003 in Sweden. Women were followed through 2009 and 2010, respectively, to ascertain subsequent pregnancies and mortality. Cox regression analysis was used to estimate associations between placental abruption and cardiovascular mortality adjusting for maternal age, education, year of the pregnancy and country. There were 49,944 deaths after an average follow-up of 23 years, of which 5453 were due to CVD. Women with placental abruption in first pregnancy (n = 10,981) had an increased risk of CVD death (hazard ratio 1.8; 95 % confidence interval 1.3, 2.4). Results were essentially unchanged by excluding women with pregestational hypertension, preeclampsia or diabetes. Women with placental abruption in any pregnancy (n = 23,529) also had a 1.8-fold increased risk of CVD mortality (95 % confidence interval 1.5, 2.2) compared with women who never experienced the condition. Our findings provide evidence that placental abruption, like other placental complications of pregnancy, is associated with women's increased risk of later CVD mortality. PMID:26177801

  11. Genotyping of 22 blood group antigen polymorphisms and establishing a national recipient registry in the Korean population.

    PubMed

    Hong, Yun Ji; Chung, Yousun; Hwang, Sang Mee; Park, Jeong Su; Kwon, Jeong-Ran; Choi, Young Sill; Kim, Jun Nyun; Lee, Dong Han; Kwon, So-Yong; Cho, Nam-Sun; Song, Eun Young; Park, Kyoung Un; Song, Junghan; Han, Kyou Sup

    2016-05-01

    It is often difficult for standard blood banks in Korea to supply adequate amounts of blood for patients with rare phenotype. Moreover, the definition of a blood in need is ambiguous, and much remains to be learned. In this study, we determined the prevalence of various red blood cell (RBC) antigens from a donor viewpoint and estimated the demand for specific antigen-negative blood from a patient viewpoint. Our data will aid the establishment of a Rare Blood Program in Korea (KRBP). RBC genotyping of 419 blood donors was performed using a Lifecodes RBC/RBC-R typing kit (Immucor, Norcross, GA). A national recipient registry website has been established. Each hospital-based blood bank voluntarily enters data on antibodies detected and identified and the outcomes of specific antigen testing. We calculated the availabilities of specific antigen-negative blood components based on these registry data and predicted the prevalence of RBC antigens via RBC genotyping. The prevalences of various RBC antigens in the D-negative population were determined for the first time, and the Cartwright, Scianna, Dombrock, Colton, Landsteiner-Wiener, Cromer, and Knops blood group systems were identified. The availabilities of specific antigen-negative units differed when calculations were based on serotyping or genotyping, especially in the D-negative group. Data on the prevalences of various blood antigens are essential for estimating the availabilities of blood components that are appropriate for use by patients expressing relevant antibodies. Then, blood banks would be able to efficiently supply safe blood products. PMID:27021300

  12. Towards a National Pediatric Musculoskeletal Trauma Outcomes Registry: the Pediatric Orthopaedic Trauma Outcomes Research Group (POTORG) experience.

    PubMed

    Vitale, Michael G; Vitale, Mark A; Lehmann, Charles L; Hyman, Joshua E; Roye, David P; Skaggs, David L; Schmitz, Michael L; Sponseller, Paul D; Flynn, John M

    2006-01-01

    This study is a pilot effort towards the broader implementation of a national pediatric musculoskeletal trauma outcomes registry. The primary goal of this project is to explore the feasibility of a web-based data acquisition and management platform and to identify catalysts and obstacles to multi-center collaboration. A prospective cohort of children presenting to the Pediatric Emergency Departments with ankle, femur, supracondylar humerus, tibial spine, or open fractures at five clinical centers between October 2001 and March 2003 comprised the study population. Patients were enrolled via the treating orthopaedic resident, using a web-based data acquisition and management system. Orthopaedic attendees were sent an automated reminder to complete a follow-up form one week after treatment, and parents of enrolled children were sent child and parent health questionnaires by e-mail and mail in order to capture health-related quality of life and post-traumatic stress symptoms. A total of 299 patients were enrolled in the study with an average age of 7.3 years. Post-treatment follow-up questionnaires were completed by 39% of the attending orthopaedic surgeons, and by 43% of the enrolled patients or patient's parents. Children old enough to complete health questionnaires scored lower in 5 of 12 functional domains including Physical Function, Role/Social Emotional/Behavioral, Parental Impact-Emotional, Family Activities, and Family Cohesion. Within the subset of patients sustaining femur fractures whose parents completed health questionnaires, 9.5% reported significant post-traumatic stress symptoms. This study demonstrates the potential of a multi-center web-based registry to facilitate the collection of a rich array of pediatric trauma, treatment and patient-based outcomes data, although new regulatory issues regarding patient privacy pose challenges to such an approach. PMID:16557126

  13. Safety and efficacy of endoscopic spray cryotherapy for Barrett's dysplasia: results of the National Cryospray Registry.

    PubMed

    Ghorbani, S; Tsai, F C; Greenwald, B D; Jang, S; Dumot, J A; McKinley, M J; Shaheen, N J; Habr, F; Coyle, W J

    2016-04-01

    Retrospective series have shown the efficacy of endoscopic spray cryotherapy in eradicating high-grade dysplasia (HGD) in Barrett's esophagus (BE); however, prospective data are lacking, and efficacy for low-grade dysplasia (LGD) is unclear. The aim of this study was to assess the efficacy and safety of spray cryotherapy in patients with LGD or HGD. A multicenter, prospective open-label registry enrolled patients with dysplastic BE. Spray cryotherapy was performed every 2-3 months until there was no endoscopic evidence of BE and no histological evidence of dysplasia, followed by surveillance endoscopies up to 2 years. Primary outcome measures were complete eradication of dysplasia (CE-D) and complete eradication of all intestinal metaplasia (CE-IM). Ninety-six subjects with Barrett's dysplasia (67% HGD; 65% long-segment BE; mean length 4.5 cm) underwent 321 treatments (mean 3.3 per subject). Mean age was 67 years, 83% were male. Eighty patients (83%) completed treatment with follow-up endoscopy (mean duration 21 months). In patients with LGD, rate of CE-D was 91% (21/23) and rate of CE-IM was 61% (14/23). In HGD, CE-D rate was 81% (46/57) and CE-IM was 65% (37/57). In patients with short-segment BE (SSBE) with any dysplasia, CE-D was achieved in 97% (30/31) and CE-IM in 77% (24/31). There were no esophageal perforations or related deaths. One subject developed a stricture, which did not require dilation. One patient was hospitalized for bleeding in the setting of non-steroidal anti-inflammatory drug use. In the largest prospective cohort to date, data suggest endoscopic spray cryotherapy is a safe and effective modality for eradication of BE with LGD or HGD, particularly with SSBE. PMID:25708903

  14. Spatial analysis of myocardial infarction in Iran: National report from the Iranian myocardial infarction registry

    PubMed Central

    Ahmadi, Ali; Soori, Hamid; Mehrabi, Yadollah; Etemad, Koorosh

    2015-01-01

    Background: Myocardial infarction (MI) is a leading cause of mortality and morbidity in Iran. No spatial analysis of MI has been conducted to date. The present study was conducted to determine the pattern of MI incidence and to identify the associated factors in Iran by province. Materials and Methods: This study has two parts. One part is prospective and hospital-based, and the other part is an ecological study. In this study, the data of 20,750 new MI cases registered in Iranian Myocardial Infarction Registry in 2012 were used. For spatial analysis in global and local, spatial autocorrelation, Moran's I, Getis-Ord, and logistic regression models were used. Data were analyzed by Stata software and ArcGIS 9.3. Results: Based on autocorrelation coefficient, a specific pattern was observed in the distribution of MI incidence in different provinces (Moran's I: 0.75, P < 0.001). Spatial pattern of incidence was approximately the same in men and women. MI incidence was clustering in six provinces (North Khorasan, Yazd, Kerman, Semnan, Golestan, and Mazandaran). Out of the associated factors with clustered MI in six provinces, temperature, humidity, hypertension, smoking, and body mass index (BMI) could be mentioned. Hypertension, smoking, and BMI contributed to clustering with, respectively, 2.36, 1.31, and 1.31 odds ratio. Conclusion: Addressing the place-based pattern of incidence and clarifying their epidemiologic dimension, including spatial analysis, has not yet been implemented in Iran. Report on MI incidence rate by place and formal borders is useful and is used in the planning and prioritization in different levels of health system. PMID:26487871

  15. The epidemiology of geriatric burns in Iran: A national burn registry-based study.

    PubMed

    Emami, Seyed-Abolhassan; Motevalian, Seyed Abbas; Momeni, Mahnoush; Karimi, Hamid

    2016-08-01

    Defining the epidemiology and outcome of geriatric burn patients is critical for specialized burn centers, health-care workers, and governments. Better resource use and effective guidelines are some of the advantages of studies focusing on this aspect. The outcome of these patients serves as an objective criterion for quality control, research, and preventive programs. We used data from the burn registry program in our country. For 2 years, >28,700 burn patients were recorded, 1721 of whom were admitted. Among them, 187 patients were ≥55 years old. Sixty-nine percent of patients were male and 31% female, with a male to female ratio of 2.22:1. The mean±standard deviation (SD) of age was 63.4±8.1. The cause of burns was flame (58.2%) and scalds (20.3%). Most of the burns were sustained at home. The mean duration of hospital stay was 19.5 days (range 3-59 days). The mean (SD) of the total body surface area (TBSA) was 20.3% (8.4%). The median hospital stay (length of stay (LOS)) was 11 days (SD=14). The increase in TBSA was related to a longer LOS (p<0.02). Burn wound infection developed in 44.3% of patients. The presence of inhalation injury was significantly related to mortality (p<0.001). Among the patients, 9% recovered completely, 74.9% recovered partially (requiring further treatment), 1% underwent amputation, and 12.8% died. The lack of insurance coverage did not affect the survival of our geriatric burn patients. However, being alone or single, ignition of clothing, cause of burn, comorbid illnesses, complications following the burn, TBSA, age, and sepsis were positively correlated with mortality. The mean cost of treatment for each patient was about $7450. PMID:27126815

  16. Using Registries to Recruit Subjects for Clinical Trials

    PubMed Central

    Tan, Meng H; Thomas, Matthew; MacEachern, Mark P

    2015-01-01

    Aim We studied the use of patient/disease registries to recruit potential subjects for prospective clinical trials - describing the number, types and major benefits of using this approach. Methods In December 2013, we conducted a focused database search in PubMed, EMBASE, and Web of Science for studies (English language only) that used registries to recruit subjects for clinical trials published in 2004-2013. Of the 233 unique citations identified, 21 used registries to recruit subjects - 10 papers and 11 abstracts. Pearling and search for subsequent full papers of the abstracts identified 4 more papers. Results Our analysis, based on these 25 citations, showed 14 are related to cancer, 3 to diabetes mellitus, 1 each to stroke, asthma, and celiac disease and 5 are disease neutral. Many types of registries (population-based cancer, quality improvement, disease-specific, web-based disease-neutral registries, local general practice registers, and national health database) are used to recruit subjects for clinical trials and uncover new knowledge. Overall, 16 registries are in the US, 4 in UK, 1 each in Canada, Spain, Australia and I in many countries. Registries can identify very large number of subjects for screening for eligibility for clinical trials, especially in very large trials, rare disease trials, and trials involving minority patients. Conclusions Registries can retrospectively identify very large numbers of potential subjects for screening for eligibility and enrollment in prospective clinical trials. This matching can lead to more timely recruitment and help solve a major problem in conducting clinical trials. PMID:25545027

  17. 77 FR 33264 - National Registry of Certified Medical Examiners Testing Providers Public Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-06-05

    ... motor vehicle drivers to undergo training, pass a certification exam, and be listed on the National... certification exam. Test delivery organizations play a key role in the rule's implementation. In writing...

  18. Validation of primary metal-on-metal hip arthroplasties on the National Joint Registry for England, Wales and Northern Ireland using data from the London Implant Retrieval Centre

    PubMed Central

    Sabah, S. A.; Henckel, J.; Cook, E.; Whittaker, R.; Hothi, H.; Pappas, Y.; Blunn, G.; Skinner, J. A.; Hart, A. J.

    2015-01-01

    Arthroplasty registries are important for the surveillance of joint replacements and the evaluation of outcome. Independent validation of registry data ensures high quality. The ability for orthopaedic implant retrieval centres to validate registry data is not known. We analysed data from the National Joint Registry for England, Wales and Northern Ireland (NJR) for primary metal-on-metal hip arthroplasties performed between 2003 and 2013. Records were linked to the London Implant Retrieval Centre (RC) for validation. A total of 67 045 procedures on the NJR and 782 revised pairs of components from the RC were included. We were able to link 476 procedures (60.9%) recorded with the RC to the NJR successfully. However, 306 procedures (39.1%) could not be linked. The outcome recorded by the NJR (as either revised, unrevised or death) for a primary procedure was incorrect in 79 linked cases (16.6%). The rate of registry-retrieval linkage and correct assignment of outcome code improved over time. The rates of error for component reference numbers on the NJR were as follows: femoral head category number 14/229 (5.0%); femoral head batch number 13/232 (5.3%); acetabular component category number 2/293 (0.7%) and acetabular component batch number 24/347 (6.5%). Registry-retrieval linkage provided a novel means for the validation of data, particularly for component fields. This study suggests that NJR reports may underestimate rates of revision for many types of metal-on-metal hip replacement. This is topical given the increasing scope for NJR data. We recommend a system for continuous independent evaluation of the quality and validity of NJR data. Cite this article: Bone Joint J 2015;97-B:10–18. PMID:25568407

  19. JBEI Registry

    Energy Science and Technology Software Center (ESTSC)

    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 Registriesmore » for data sharing and exchange.« less

  20. 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

  1. Statin therapy and long-term adverse limb outcomes in patients with peripheral artery disease: insights from the REACH registry

    PubMed Central

    Kumbhani, Dharam J.; Steg, Ph. Gabriel; Cannon, Christopher P.; Eagle, Kim A.; Smith, Sidney C.; Goto, Shinya; Ohman, E. Magnus; Elbez, Yedid; Sritara, Piyamitr; Baumgartner, Iris; Banerjee, Subhash; Creager, Mark A.; Bhatt, Deepak L.

    2014-01-01

    Aims Due to a high burden of systemic cardiovascular events, current guidelines recommend the use of statins in all patients with peripheral artery disease (PAD). We sought to study the impact of statin use on limb prognosis in patients with symptomatic PAD enrolled in the international REACH registry. Methods Statin use was assessed at study enrolment, as well as a time-varying covariate. Rates of the primary adverse limb outcome (worsening claudication/new episode of critical limb ischaemia, new percutaneous/surgical revascularization, or amputation) at 4 years and the composite of cardiovascular death/myocardial infarction/stroke were compared among statin users vs. non-users. Results A total of 5861 patients with symptomatic PAD were included. Statin use at baseline was 62.2%. Patients who were on statins had a significantly lower risk of the primary adverse limb outcome at 4 years when compared with those who were not taking statins [22.0 vs. 26.2%; hazard ratio (HR), 0.82; 95% confidence interval (CI), 0.72–0.92; P = 0.0013]. Results were similar when statin use was considered as a time-dependent variable (P = 0.018) and on propensity analysis (P < 0.0001). The composite of cardiovascular death/myocardial infarction/stroke was similarly reduced (HR, 0.83; 95% CI, 0.73–0.96; P = 0.01). Conclusion Among patients with PAD in the REACH registry, statin use was associated with an ∼18% lower rate of adverse limb outcomes, including worsening symptoms, peripheral revascularization, and ischaemic amputations. These findings suggest that statin therapy not only reduces the risk of adverse cardiovascular events, but also favourably affects limb prognosis in patients with PAD. PMID:24585266

  2. Positive predictive values of the coding for bisphosphonate therapy among cancer patients in the Danish National Patient Registry

    PubMed Central

    Nielsson, Malene Schou; Erichsen, Rune; Frøslev, Trine; Taylor, Aliki; Acquavella, John; Ehrenstein, Vera

    2012-01-01

    Background The purpose of this study was to estimate the positive predictive value (PPV) of the coding for bisphosphonate treatment in selected cancer patients from the Danish National Patient Registry (DNPR). Methods Through the DNPR, we identified all patients with recorded cancer of the breast, prostate, lung, kidney, and with multiple myeloma. We restricted the study sample to patients with bisphosphonate treatment recorded during an admission to Aalborg Hospital, Denmark, from 2005 through 2009. We retrieved and reviewed medical records of these patients from the initial cancer diagnosis onwards to confirm or rule out bisphosphonate therapy. We calculated the PPV of the treatment coding as the proportion of patients with confirmed bisphosphonate treatment. Results We retrieved and reviewed the medical records of 60 cancer patients with treatment codes corresponding to bisphosphonate therapy. Recorded code corresponded to treatment administered intravenously for 59 of 60 patients, corresponding to a PPV of 98.3% (95% confidence interval 92.5–99.8). In the remaining patient, bisphosphonate treatment was also confirmed but was an orally administered bisphosphonate; thus, the treatment for any bisphosphonate regardless of administration was confirmed for all 60 patients (PPV of 100%, 95% confidence interval 95.9–100.0). Conclusion The PPV of bisphosphonate treatment coding among cancer patients in the DNPR is very high and the recorded treatment nearly always corresponds to intravenous administration. PMID:22977313

  3. Prostate Cancer in South Africa: Pathology Based National Cancer Registry Data (1986–2006) and Mortality Rates (1997–2009)

    PubMed Central

    Babb, Chantal; Urban, Margaret; Kielkowski, Danuta; Kellett, Patricia

    2014-01-01

    Prostate cancer is one of the most common male cancers globally; however little is known about prostate cancer in Africa. Incidence data for prostate cancer in South Africa (SA) from the pathology based National Cancer Registry (1986–2006) and data on mortality (1997–2009) from Statistics SA were analysed. World standard population denominators were used to calculate age specific incidence and mortality rates (ASIR and ASMR) using the direct method. Prostate cancer was the most common male cancer in all SA population groups (excluding basal cell carcinoma). There are large disparities in the ASIR between black, white, coloured, and Asian/Indian populations: 19, 65, 46, and 19 per 100 000, respectively, and ASMR was 11, 7, 52, and 6 per 100 000, respectively. Prostate cancer was the second leading cause of cancer death, accounting for around 13% of male deaths from a cancer. The average age at diagnosis was 68 years and 74 years at death. For SA the ASIR increased from 16.8 in 1986 to 30.8 in 2006, while the ASMR increased from 12.3 in 1997 to 16.7 in 2009. There has been a steady increase of incidence and mortality from prostate cancer in SA. PMID:24955252

  4. Prostate cancer in South Africa: pathology based national cancer registry data (1986-2006) and mortality rates (1997-2009).

    PubMed

    Babb, Chantal; Urban, Margaret; Kielkowski, Danuta; Kellett, Patricia

    2014-01-01

    Prostate cancer is one of the most common male cancers globally; however little is known about prostate cancer in Africa. Incidence data for prostate cancer in South Africa (SA) from the pathology based National Cancer Registry (1986-2006) and data on mortality (1997-2009) from Statistics SA were analysed. World standard population denominators were used to calculate age specific incidence and mortality rates (ASIR and ASMR) using the direct method. Prostate cancer was the most common male cancer in all SA population groups (excluding basal cell carcinoma). There are large disparities in the ASIR between black, white, coloured, and Asian/Indian populations: 19, 65, 46, and 19 per 100 000, respectively, and ASMR was 11, 7, 52, and 6 per 100 000, respectively. Prostate cancer was the second leading cause of cancer death, accounting for around 13% of male deaths from a cancer. The average age at diagnosis was 68 years and 74 years at death. For SA the ASIR increased from 16.8 in 1986 to 30.8 in 2006, while the ASMR increased from 12.3 in 1997 to 16.7 in 2009. There has been a steady increase of incidence and mortality from prostate cancer in SA. PMID:24955252

  5. National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions

    ClinicalTrials.gov

    2015-12-08

    Marfan Syndrome; Turner Syndrome; Ehlers-Danlos Syndrome; Loeys-Dietz Syndrome; FBN1, TGFBR1, TGFBR2, ACTA2 or MYH11 Genetic Mutation; Bicuspid Aortic Valve Without Known Family History; Bicuspid Aortic Valve With Family History; Bicuspid Aortic Valve With Coarctation; Familial Thoracic Aortic Aneurysm and Dissections; Shprintzen-Goldberg Syndrome; Other Aneur/Diss of Thoracic Aorta Not Due to Trauma, <50yo; Other Congenital Heart Disease

  6. No signs of dose escalations of potent opioids prescribed after tibial shaft fractures: a study of Swedish National Registries

    PubMed Central

    2014-01-01

    Background The pattern of opioid use after skeletal trauma is a neglected topic in pain medicine. The purpose of this study was to analyse the long-term prescriptions of potent opioids among patients with tibial shaft fractures. Methods Data were extracted from the Swedish National Hospital Discharge Register, the National Pharmacy Register, and the Total Population Register, and analysed accordingly. The study period was 2005–2008. Results We identified 2,571 patients with isolated tibial shaft fractures. Of these, 639 (25%) collected a prescription for opioids after the fracture. The median follow-up time was 17 (interquartile range [IQR] 7–27) months. Most patients with opioid prescriptions after fracture were male (61%) and the median age was 45 (16–97) years. The leading mechanism of injury was fall on the same level (41%). At 6 and 12 months after fracture, 21% (95% CI 17–24) and 14% (11–17) were still being treated with opioids. Multiple Cox regression-analysis (adjusted for age, sex, type of treatment, and mechanism of injury) revealed that older patients (age >50 years) were more likely to end opioid prescriptions (Hazard ratio 1.5 [95% CI 1.3-1.9]). During follow-up, the frequency of patients on moderate and high doses declined. Comparison of the daily morphine equivalent dose among individuals who both had prescriptions during the first 3 months and the 6th month indicated that the majority of these patients (11/14) did not have dose escalations. Conclusions We did not see any signs in registry-data of major dose escalations over time in patients on potent opioids after tibial shaft fractures. PMID:24418163

  7. Lombardia GENS: a collaborative registry for monogenic diseases associated with stroke

    PubMed Central

    Bersano, Anna; Baron, Pierluigi; Lanfranconi, Silvia; Trobia, Nadia; Sterzi, Roberto; Motto, Cristina; Comi, Giancarlo; Sessa, Maria; Martinelli-Boneschi, Filippo; Micieli, Giuseppe; Ferrarese, Carlo; Santoro, Patrizia; Parati, Eugenio; Boncoraglio, Giorgio; Padovani, Alessandro; Pezzini, Alessandro; Candelise, Livia

    2012-01-01

    Summary The Italian region of Lombardy, with its existing stroke centers and high-technology laboratories, provides a favorable context for studying monogenic diseases associated with stroke. The Lombardia GENS project was set up to create a regional network for the diagnosis of six monogenic diseases associated with stroke: CADASIL, Fabry disease, MELAS, familial and sporadic hemiplegic migraine, hereditary cerebral amyloid angiopathy and Marfan syndrome. The network comprises 36 stroke centers and seven high-technology laboratories, performing molecular analysis. In this context, all stroke/TIA patients fulfilling clinical criteria for monogenic diseases are currently being included in an ongoing study. Demographic, clinical and family data and diagnostic criteria are collected using standardized forms. On the basis of stroke incidence in Lombardy and the reported prevalence of the diseases considered, we expect, during the course of the study, to collect datasets and DNA samples from more than 200 stroke patients suspected of having monogenic diseases. This will allow evaluation of the regional burden and better phenotype characterization of monogenic diseases associated with stroke. PMID:23158583

  8. National Human Radiobiological Tissue Repository (NHRTR) at the United States Transuranium and Uranium Registries

    DOE Data Explorer

    The NHRTR, one component of the USTUR, contains frozen tissues, tissue solutions, microscope slides, and paraffin blocks that were collected by the USTUR at the autopsy of workers with documented intakes of plutonium, americium, uranium, and thorium. The samples are available to qualified scientists for further research. Thousands of frozen, ashed, dried, and plastic embedded bone samples from the radium studies carried out by Argonne National Laboratory, Argonne Cancer Research Hospital, the Massachusetts Institute of Technology, and the New Jersey Radium Research Project are available and linked by case number to de-identified, published case data. These data include the person's source of exposure (dial painter, therapeutic injection, etc.), estimated body burden, radiochemical results, and medical history. Other samples, including organs and whole body donations, have come from volunteer donors who were impacted by elements such as plutonium, throium, etc. See the USTUR website for information on how to apply for research samples or how to become a volunteer donor. [Information taken from http://www.ustur.wsu.edu/NHRTR/index.html#

  9. Physical Trauma and Amyotrophic Lateral Sclerosis: A Population-Based Study Using Danish National Registries.

    PubMed

    Seals, Ryan M; Hansen, Johnni; Gredal, Ole; Weisskopf, Marc G

    2016-02-15

    Prior studies have suggested that physical trauma might be associated with the development of amyotrophic lateral sclerosis (ALS). We conducted a population-based, individually matched case-control study in Denmark to assess whether hospitalization for trauma is associated with a higher risk of developing ALS. There were 3,650 incident cases of ALS in the Danish National Patient Register from 1982 to 2009. We used risk-set sampling to match each case to 100 age- and sex-matched population controls alive on the date of the case's diagnosis. Odds ratios and 95% confidence intervals were calculated using a conditional logistic regression model. History of trauma diagnosis was also obtained from the Danish Patient Register. When traumas in the 5 years prior to the index date were excluded, there was a borderline association between any trauma and ALS (odds ratio (OR) = 1.09, 95% confidence interval (CI): 0.99, 1.19). A first trauma before age 55 years was associated with ALS (OR = 1.22, 95% CI: 1.08, 1.37), whereas first traumas at older ages were not (OR = 0.97, 95% CI: 0.85, 1.10). Our data suggest that physical trauma at earlier ages is associated with ALS risk. Age at first trauma could help explain discrepancies in results of past studies of trauma and ALS. PMID:26825926

  10. Predictable and SuStainable Implementation of National Cardiovascular Registries (PASSION) infrastructure: A think tank report from Medical Device Epidemiological Network Initiative (MDEpiNet).

    PubMed

    Zeitler, Emily P; Al-Khatib, Sana M; Drozda, Joseph P; Kessler, Larry G; Kirtane, Ajay J; Kong, David F; Laschinger, John; Marinac-Dabic, Danica; Morice, Marie-Claude; Reed, Terrie; Sedrakyan, Art; Stein, Kenneth M; Tcheng, James; Krucoff, Mitchell W

    2016-01-01

    The MDEpiNet is a public-private partnership between the US Food and Drug Administration's Center for Devices and Radiological Health and participating partners. The PASSION program is an MDEpiNet-sponsored program that aims to demonstrate the goals of MDEpiNet by using cardiovascular medical device registries to bridge evidence gaps across the medical device total product life cycle. To this end, a PASSION Think Tank meeting took place in October 2014 in Silver Spring, MD, to facilitate discussion between stakeholders about the successes, challenges, and future novel applications of medical device registries, with particular emphasis on identifying pilot projects. Participants spanned a broad range of groups including patients, device manufacturers, regulators, physicians/academicians, professional societies, providers, and payers. The meeting focus included 4 areas of cardiovascular medicine intended to cultivate interest in 4 MDEpiNet disease-specific/device-specific working groups: coronary intervention, electrophysiology, valvular disease, and peripheral vascular disease. In addition, more general issues applying to registry-based infrastructure and analytical methodologies for assessing device benefit/risk were considered to provide context for the working groups as PASSION programs going forward. This article summarizes the discussions at the meeting and the future directions of the PASSION program. PMID:26699602

  11. Relationship between socio-economic position and general, maxillofacial and dental trauma: A National Trauma Registry Study.

    PubMed

    Levin, Liran; Lin, Shaul; Goldman, Sharon; Peleg, Kobi

    2010-08-01

    Trauma, a major public health problem, has been extensively studied. However, characteristics of maxillofacial and dental injuries and their association with socio-economic position (SEP) have not been thoroughly documented. This study retrospectively investigated the occurrence of maxillofacial, dental and general trauma in Israel, and examined the relationship between socio-economic status and trauma-related hospitalizations. Records were obtained for all trauma patients hospitalized and recorded in the National Israel Trauma Registry (ITR) between January 1, 2003 and December 31, 2005. Maxillofacial and dental injuries were separated and further analyzed by residence locality and SEP. The socio-economic index, developed by the Israel Central Bureau of Statistics, was used to determine the socio-economic status of 50 selected localities. During the study period, 77 072 trauma patients were hospitalized, of whom 3972 (5%) were diagnosed with maxillofacial or dental injuries. Among the selected localities, 42 303 hospitalizations were recorded, of which 1886 (4.5%) involved maxillofacial or dental injuries. For all traumas, lower injury rates were found among residents living in high socio-economic localities. The difference in hospitalization rates for maxillofacial and dental injuries was not significant. The cause of injury differed by age, SEP and category of injury. A fall (35%) or road crash (33%) caused most of the maxillofacial injuries, with 50% of dental injuries because of a road crash. Intentional injuries constituted 22% of the maxillofacial-related hospitalizations and were more prevalent among adults living in low SEP localities. These data should be used to promote injury prevention programs with emphasis directed at high risk populations. PMID:20455914

  12. The National Spina Bifida Patient Registry: Profile of a Large Cohort of Participants from the First 10 Clinics

    PubMed Central

    Sawin, Kathleen J.; Liu, Tiebin; Ward, Elisabeth; Thibadeau, Judy; Schechter, Michael S.; Soe, Minn M.; Walker, William

    2015-01-01

    Objective To use data from the US National Spina Bifida Patient Registry (NSBPR) to describe variations in Contexts of Care, Processes of Care, and Health Outcomes among individuals with spina bifida (SB) receiving care in 10 clinics. Study design Reported here are baseline cross-sectional data representing the first visit of 2172 participants from 10 specialized, multidisciplinary SB clinics participating in the NSBPR. We used descriptive statistics, the Fisher exact test, χ2 test, and Wilcoxon rank-sum test to examine the data. Results The mean age was 10.1 (SD 8.1) years with slightly more female subjects (52.5%). The majority was white (63.4%) and relied upon public insurance (53.5%). One-third had sacral lesions, 44.8% had mid-low lumbar lesions, and 24.9% had high lumbar and thoracic lesions. The most common surgery was ventricular shunt placement (65.7%). The most common bladder-management technique among those with bladder impairment was intermittent catheterization (69.0%). Almost 14% experienced a pressure ulcer in the last year. Of those ages 5 years or older with bowel or bladder impairments, almost 30% were continent of stool; a similar percentage was continent of urine. Most variables were associated with type of SB diagnosis. Conclusion The NSBPR provides a cross section of a predominantly pediatric population of patients followed in specialized SB programs. There were wide variations in the variables studied and major differences in Context of Care, Processes of Care, and Health Outcomes by type of SB. Such wide variation and the differences by type of SB should be considered in future analyses of outcomes. PMID:25444012

  13. Evaluation of a New Balloon Catheter for Difficult Calcified Lesions in Infrainguinal Arterial Disease: Outcome of a Multicenter Registry

    SciTech Connect

    Spaargaren, G. J.; Lee, M. J.; Reekers, J. A.; Overhagen, H. van; Schultze Kool, L. J.; Hoogeveen, Y. L.

    2009-01-15

    The purpose of this study was to assess the technical performance and immediate procedure outcome of a new balloon catheter in the treatment of calcified lesions in infrainguinal arterial disease. Seventy-five patients with infrainguinal arterial disease were prospectively entered into the registry. The catheter (ReeKross Clearstream, Ireland) is a 5- to 6-Fr balloon catheter with a rigid shaft intended for enhanced pushability. Only technical procedural outcome was recorded. Treated calcified lesions (range: 5-30 cm), assessed angiographically, were located in the superficial femoral, popliteal, and crural arteries. In 67 patients the lesion was an occlusion. Guidewire passage occurred subintimally in 68 patients. In 24 patients a standard balloon catheter was chosen as first treatment catheter: 5 failed to cross the lesion, 8 balloons ruptured, and in 11 patients there was an inadequate dilatation result. In only one of the five patients did subsequent use of the ReeKross catheter also fail in lesion crossing. The ReeKross was successful as secondary catheter in the other 23 cases. In 50 patients the ReeKross was used as primary catheter. In total the ReeKross crossed the lesions in 74 patients. After passage and dilatation with this catheter in 73 patients (1 failed true-lumen reentry), 19 had >30% residual lesions, of which 11 were not treated and 8 were successfully stented. No ReeKross balloons ruptured. We conclude that in the treatment of difficult calcified lesions in arterial stenotic or occlusive disease, the choice of a high-pushability angioplasty catheter, with more calcification-resistant balloon characteristics, like the ReeKross, warrants consideration.

  14. 77 FR 7167 - Global Rare Diseases Patient Registry and Data Repository (GRDR) Notice and Request for...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-02-10

    ... found at http://rarediseases.info.nih.gov/GRDR . The goal of the GRDR is to enable data analysis within... pan-disease analysis, data must be captured and collected in a standardized manner. Use of Common Data... research tool to accelerate research and better facilitate the understanding of the underlying...

  15. Cure of X-linked lymphoproliferative disease (XLP) with allogeneic hematopoietic stem cell transplantation (HSCT): report from the XLP registry.

    PubMed

    Gross, T G; Filipovich, A H; Conley, M E; Pracher, E; Schmiegelow, K; Verdirame, J D; Vowels, M; Williams, L L; Seemayer, T A

    1996-05-01

    Seven male patients in the David T Purtilo International X-linked Lymphoproliferative Disease (XLP) Registry have undergone allogeneic hematopoietic stem cell transplantation (HSCT). All patients received HSCT from HLA-identical donors: sibling BM, five; unrelated BM, one; and sibling umbilical cord blood, one. Ages at time of HSCT ranged from 5 to 30 years. Pre-HSCT clinical course varied, but four boys had a significant history of chronic and/or serious infections. Conditioning regimens varied: TBI containing regimens, four, chemotherapy only, three. All patients engrafted. Six developed grade I-II acute GVHD but no chronic GVHD. Four are alive and well with normal immune function greater than 3 years following HSCT. Three died within 100 days: disseminated adenovirus, one; polymicrobial sepsis, one; and multiple organ system failure and bleeding diathesis, one. No EBV-associated post-transplant complications were observed, even though all donors except the umbilical cord blood were EBV-seropositive. Unsuccessful HSCT was associated with age at HSCT (> 15 years), TBI-containing regimen and significant history for pre-HSCT infections. These results provide evidence that HSCT performed during childhood with HLA-identical sibling donors, regardless of EBV serostatus, offers the only curative therapy for XLP. PMID:8733691

  16. The Use of Registries to Improve Cancer Treatment: A National Database for Patients Treated with Interleukin-2 (IL-2)

    PubMed Central

    Kaufman, Howard L.; Wong, Michael K.; Daniels, Gregory A.; McDermott, David F.; Aung, Sandra; Lowder, James N.; Morse, Michael A.

    2014-01-01

    Registries evaluating un-randomized patients have provided valuable information with respect to a therapy’s utility, treatment practices, and evolution over time. While immunotherapy for cancer has been around for more than three decades, data collection in the form of a registry has not been undertaken. The authors believe that establishing a registry to study HD IL-2 immunotherapy, which has been the only systemic therapy producing long term unmaintained remissions for advanced kidney cancer and melanoma for over 20 years, will be an important resource in understanding the impact of immunotherapy with HD IL-2 in a rapidly changing therapeutic environment. Optimizing administration and improving selection of appropriate patients likely to benefit from HD IL-2 immunotherapy are two of many benefits to be derived from this endeavor. PMID:25562142

  17. NATIONAL EXPOSURE REGISTRY (NER)

    EPA Science Inventory

    This system is a listing of persons (general population) with documented exposure to select hazardous substances (superfund related). All adverse health outcomes are monitored prospectively. Retrospective identification of adverse health outcomes (usually verified by medical reco...

  18. Time to treatment benefit for adult patients with Fabry disease receiving agalsidase β: data from the Fabry Registry

    PubMed Central

    Ortiz, Alberto; Abiose, Ademola; Bichet, Daniel G; Cabrera, Gustavo; Charrow, Joel; Germain, Dominique P; Hopkin, Robert J; Jovanovic, Ana; Linhart, Aleš; Maruti, Sonia S; Mauer, Michael; Oliveira, João P; Patel, Manesh R; Politei, Juan; Waldek, Stephen; Wanner, Christoph; Yoo, Han-Wook; Warnock, David G

    2016-01-01

    Background Agalsidase β is a form of enzyme replacement therapy for Fabry disease, a genetic disorder characterised by low α-galactosidase A activity, accumulation of glycosphingolipids and life-threatening cardiovascular, renal and cerebrovascular events. In clinical trials, agalsidase β cleared glycolipid deposits from endothelial cells within 6 months; clearance from other cell types required sustained treatment. We hypothesised that there might be a ‘lag time’ to clinical benefit after initiating agalsidase β treatment, and analysed the incidence of severe clinical events over time in patients receiving agalsidase β. Methods The incidence of severe clinical events (renal failure, cardiac events, stroke, death) was studied in 1044 adult patients (641 men, 403 women) enrolled in the Fabry Registry who received agalsidase β (average dose 1 mg/kg every 2 weeks) for up to 5 years. Results The incidence of all severe clinical events was 111 per 1000 person-years (95% CI 84 to 145) during the first 6 months. After 6 months, the incidence decreased and remained stable within the range of 40–58 events per 1000 patient-years. The largest decrease in incidence rates was among male patients and those aged ≥40 years when agalsidase β was initiated. Conclusions Contrary to the expected increased incidence of severe clinical events with time, adult patients with Fabry disease had decreased incidence of severe clinical events after 6 months treatment with agalsidase β 1 mg/kg every 2 weeks. Trial registration number NCT00196742. PMID:26993266

  19. Psychotropic Medication Use among Children with Autism Spectrum Disorders Enrolled in a National Registry, 2007-2008

    ERIC Educational Resources Information Center

    Rosenberg, Rebecca E.; Mandell, David S.; Farmer, Janet E.; Law, J. Kiely; Marvin, Alison R.; Law, Paul A.

    2010-01-01

    Patterns of current psychotropic medication use among 5,181 children with autism spectrum disorders (ASD) enrolled in a Web-based registry were examined. Overall, 35% used at least one psychotropic medication, most commonly stimulants, neuroleptics, and/or antidepressants. Those who were uninsured or exclusively privately insured were less likely…

  20. Atherosclerotic Risk Factors and Their Association With Hospital Mortality Among Patients With First Myocardial Infarction (from the National Registry of Myocardial Infarction)

    PubMed Central

    Canto, John G.; Kiefe, Catarina I.; Rogers, William J.; Peterson, Eric D.; Frederick, Paul D.; French, William J.; Gibson, C. Michael; Pollack, Charles V.; Ornato, Joseph P.; Zalenski, Robert J.; Penney, Jan; Tiefenbrunn, Alan J.; Greenland, Philip

    2013-01-01

    Few studies have examined associations between atherosclerotic risk factors and short-term mortality after first myocardial infarction (MI). Histories of 5 traditional atherosclerotic risk factors at presentation (diabetes, hypertension, smoking, dyslipidemia, and family history of premature heart disease) and hospital mortality were examined among 542,008 patients with first MIs in the National Registry of Myocardial Infarction (1994 to 2006). On initial MI presentation, history of hypertension (52.3%) was most common, followed by smoking (31.3%). The least common risk factor was diabetes (22.4%). Crude mortality was highest in patients with MI with diabetes (11.9%) and hypertension (9.8%) and lowest in those with smoking histories (5.4%) and dyslipidemia (4.6%). The inclusion of 5 atherosclerotic risk factors in a stepwise multivariate model contributed little toward predicting hospital mortality over age alone (C-statistic = 0.73 and 0.71, respectively). After extensive multivariate adjustments for clinical and sociodemographic factors, patients with MI with diabetes had higher odds of dying (odds ratio [OR] 1.23, 95% confidence interval [CI] 1.20 to 1.26) than those without diabetes and similarly for hypertension (OR 1.08, 95% CI 1.06 to 1.11). Conversely, family history (OR 0.71, 95% CI 0.69 to 0.73), dyslipidemia (OR 0.62, 95% CI 0.60 to 0.64), and smoking (OR 0.85, 95% CI 0.83 to 0.88) were associated with decreased mortality (C-statistic = 0.82 for the full model). In conclusion, in the setting of acute MI, histories of diabetes and hypertension are associated with higher hospital mortality, but the inclusion of atherosclerotic risk factors in models of hospital mortality does not improve predictive ability beyond other major clinical and sociodemographic characteristics. PMID:22840346

  1. Atherosclerotic risk factors and their association with hospital mortality among patients with first myocardial infarction (from the National Registry of Myocardial Infarction).

    PubMed

    Canto, John G; Kiefe, Catarina I; Rogers, William J; Peterson, Eric D; Frederick, Paul D; French, William J; Gibson, C Michael; Pollack, Charles V; Ornato, Joseph P; Zalenski, Robert J; Penney, Jan; Tiefenbrunn, Alan J; Greenland, Philip

    2012-11-01

    Few studies have examined associations between atherosclerotic risk factors and short-term mortality after first myocardial infarction (MI). Histories of 5 traditional atherosclerotic risk factors at presentation (diabetes, hypertension, smoking, dyslipidemia, and family history of premature heart disease) and hospital mortality were examined among 542,008 patients with first MIs in the National Registry of Myocardial Infarction (1994 to 2006). On initial MI presentation, history of hypertension (52.3%) was most common, followed by smoking (31.3%). The least common risk factor was diabetes (22.4%). Crude mortality was highest in patients with MI with diabetes (11.9%) and hypertension (9.8%) and lowest in those with smoking histories (5.4%) and dyslipidemia (4.6%). The inclusion of 5 atherosclerotic risk factors in a stepwise multivariate model contributed little toward predicting hospital mortality over age alone (C-statistic = 0.73 and 0.71, respectively). After extensive multivariate adjustments for clinical and sociodemographic factors, patients with MI with diabetes had higher odds of dying (odds ratio [OR] 1.23, 95% confidence interval [CI] 1.20 to 1.26) than those without diabetes and similarly for hypertension (OR 1.08, 95% CI 1.06 to 1.11). Conversely, family history (OR 0.71, 95% CI 0.69 to 0.73), dyslipidemia (OR 0.62, 95% CI 0.60 to 0.64), and smoking (OR 0.85, 95% CI 0.83 to 0.88) were associated with decreased mortality (C-statistic = 0.82 for the full model). In conclusion, in the setting of acute MI, histories of diabetes and hypertension are associated with higher hospital mortality, but the inclusion of atherosclerotic risk factors in models of hospital mortality does not improve predictive ability beyond other major clinical and sociodemographic characteristics. PMID:22840346

  2. Mapping the differences in care for 5,000 spinal muscular atrophy patients, a survey of 24 national registries in North America, Australasia and Europe.

    PubMed

    Bladen, Catherine L; Thompson, Rachel; Jackson, Jacqueline M; Garland, Connie; Wegel, Claire; Ambrosini, Anna; Pisano, Paolo; Walter, Maggie C; Schreiber, Olivia; Lusakowska, Anna; Jedrzejowska, Maria; Kostera-Pruszczyk, Anna; van der Pol, Ludo; Wadman, Renske I; Gredal, Ole; Karaduman, Ayse; Topaloglu, Haluk; Yilmaz, Oznur; Matyushenko, Vitaliy; Rasic, Vedrana Milic; Kosac, Ana; Karcagi, Veronika; Garami, Marta; Herczegfalvi, Agnes; Monges, Soledad; Moresco, Angelica; Chertkoff, Lilien; Chamova, Teodora; Guergueltcheva, Velina; Butoianu, Niculina; Craiu, Dana; Korngut, Lawrence; Campbell, Craig; Haberlova, Jana; Strenkova, Jana; Alejandro, Moises; Jimenez, Alatorre; Ortiz, Genaro Gabriel; Enriquez, Gracia Viviana Gonzalez; Rodrigues, Miriam; Roxburgh, Richard; Dawkins, Hugh; Youngs, Leanne; Lahdetie, Jaana; Angelkova, Natalija; Saugier-Veber, Pascal; Cuisset, Jean-Marie; Bloetzer, Clemens; Jeannet, Pierre-Yves; Klein, Andrea; Nascimento, Andres; Tizzano, Eduardo; Salgado, David; Mercuri, Eugenio; Sejersen, Thomas; Kirschner, Jan; Rafferty, Karen; Straub, Volker; Bushby, Kate; Verschuuren, Jan; Beroud, Christophe; Lochmüller, Hanns

    2014-01-01

    Spinal muscular atrophy (SMA) is an autosomal recessive genetic disorder characterised by the degeneration of motor neurons and progressive muscle weakness. It is caused by homozygous deletions in the survival motor neuron gene on chromosome 5. SMA shows a wide range of clinical severity, with SMA type I patients often dying before 2 years of age, whereas type III patients experience less severe clinical manifestations and can have a normal life span. Here, we describe the design, setup and utilisation of the TREAT-NMD national SMA patient registries characterised by a small, but fully standardised set of registry items and by genetic confirmation in all patients. We analyse a selection of clinical items from the SMA registries in order to provide a snapshot of the clinical data stratified by SMA subtype, and compare these results with published recommendations on standards of care. Our study included 5,068 SMA patients in 25 countries. A total of 615 patients were ventilated, either invasively (178) or non-invasively (437), 439 received tube feeding and 455 had had scoliosis surgery. Some of these interventions were not available to patients in all countries, but differences were also noted among high-income countries with comparable wealth and health care systems. This study provides the basis for further research, such as quality of life in ventilated SMA patients, and will inform clinical trial planning. PMID:24162038

  3. Data Standards in Diabetes Patient Registries

    PubMed Central

    Richesson, Rachel L

    2011-01-01

    Widespread adoption of electronic health records (EHRs) and expansion of patient registries present opportunities to improve patient care and population health and advance translational research. However, optimal integration of patient registries with EHR functions and aggregation of regional registries to support national or global analyses will require the use of standards. Currently, there are no standards for patient registries and no content standards for health care data collection or clinical research, including diabetes research. Data standards can facilitate new registry development by supporting reuse of well-defined data elements and data collection systems, and they can enable data aggregation for future research and discovery. This article introduces standardization topics relevant to diabetes patient registries, addresses issues related to the quality and use of registries and their integration with primary EHR data collection systems, and proposes strategies for implementation of data standards in diabetes research and management. PMID:21722563

  4. NATIONAL ELECTRONIC DISEASE SURVEILLANCE SYSTEM (NEDSS)

    EPA Science Inventory

    The National Electronic Disease Surveillance System (NEDSS) project is a public health initiative to provide a standard-based, integrated approach to disease surveillance and to connect public health surveillance to the burgeoning clinical information systems infrastructure. NEDS...

  5. 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

  6. Safety of biologics in rheumatoid arthritis: data from randomized controlled trials and registries

    PubMed Central

    Codreanu, Catalin; Damjanov, Nemanja

    2015-01-01

    Over the past decade, the use of biologics has significantly changed the management of rheumatoid arthritis (RA). Biologics selectively target components of the immune system, resulting in better disease control. However, the growing use of biologics in RA has increased safety concerns among rheumatologists. Randomized controlled trials (RCTs) and registries are the most reliable sources of clinical safety data. Although safety data from RCTs provide certain insights into the clinical safety profile of an agent, strict constraints in study design (eg, exclusion criteria and restrictive treatment protocols) often do not accurately reflect possible safety issues in the use of the agent, either in the clinical setting or over long-term treatment. Registries, on the other hand, are not restrictive regarding patient enrollment, making them more reliable in evaluating long-term safety. A number of registries have been established globally: in Europe, the United States, and Asia. However, the availability of registry data from Eastern Europe is lacking. The notable exceptions so far are registries from the Czech Republic (ATTRA, a registry of patients treated with anti-tumor necrosis factor-alpha drugs) and Serbia (National registry of patients with rheumatoid arthritis in Serbia [NARRAS]). The current report provides an overview of safety data with biologics in RA from RCTs and registries. Availability of regional safety data from Eastern Europe is of great importance to its clinicians for making evidence-based treatment decisions in RA. PMID:25670881

  7. Safety of biologics in rheumatoid arthritis: data from randomized controlled trials and registries.

    PubMed

    Codreanu, Catalin; Damjanov, Nemanja

    2015-01-01

    Over the past decade, the use of biologics has significantly changed the management of rheumatoid arthritis (RA). Biologics selectively target components of the immune system, resulting in better disease control. However, the growing use of biologics in RA has increased safety concerns among rheumatologists. Randomized controlled trials (RCTs) and registries are the most reliable sources of clinical safety data. Although safety data from RCTs provide certain insights into the clinical safety profile of an agent, strict constraints in study design (eg, exclusion criteria and restrictive treatment protocols) often do not accurately reflect possible safety issues in the use of the agent, either in the clinical setting or over long-term treatment. Registries, on the other hand, are not restrictive regarding patient enrollment, making them more reliable in evaluating long-term safety. A number of registries have been established globally: in Europe, the United States, and Asia. However, the availability of registry data from Eastern Europe is lacking. The notable exceptions so far are registries from the Czech Republic (ATTRA, a registry of patients treated with anti-tumor necrosis factor-alpha drugs) and Serbia (National registry of patients with rheumatoid arthritis in Serbia [NARRAS]). The current report provides an overview of safety data with biologics in RA from RCTs and registries. Availability of regional safety data from Eastern Europe is of great importance to its clinicians for making evidence-based treatment decisions in RA. PMID:25670881

  8. Enhancing cancer registry data for comparative effectiveness research (CER) project: overview and methodology.

    PubMed

    Chen, Vivien W; Eheman, Christie R; Johnson, Christopher J; Hernandez, Monique N; Rousseau, David; Styles, Timothy S; West, Dee W; Hsieh, Meichin; Hakenewerth, Anne M; Celaya, Maria O; Rycroft, Randi K; Wike, Jennifer M; Pearson, Melissa; Brockhouse, Judy; Mulvihill, Linda G; Zhang, Kevin B

    2014-01-01

    Following the Institute of Medicine's 2009 report on the national priorities for comparative effectiveness research (CER), funding for support of CER became available in 2009 through the American Recovery and Re-investment Act. The Centers for Disease Control and Prevention (CDC) received funding to enhance the infrastructure of population-based cancer registries and to expand registry data collection to support CER. The CDC established 10 specialized registries within the National Program of Cancer Registries (NPCR) to enhance data collection for all cancers and to address targeted CER questions, including the clinical use and prognostic value of specific biomarkers. The project also included a special focus on detailed first course of treatment for cancers of the breast, colon, and rectum, as well as chronic myeloid leukemia (CML) diagnosed in 2011. This paper describes the methodology and the work conducted by the CDC and the NPCR specialized registries in collecting data for the 4 special focused cancers, including the selection of additional data variables, development of data collection tools and software modifications, institutional review board approvals, training, collection of detailed first course of treatment, and quality assurance. It also presents the characteristics of the study population and discusses the strengths and limitations of using population-based cancer registries to support CER as well as the potential future role of population-based cancer registries in assessing the quality of patient care and cancer control. PMID:25419602

  9. Enhancing Cancer Registry Data for Comparative Effectiveness Research (CER) Project: Overview and Methodology

    PubMed Central

    Chen, Vivien W.; Eheman, Christie R.; Johnson, Christopher J.; Hernandez, Monique N.; Rousseau, David; Styles, Timothy S.; West, Dee W.; Hsieh, Meichin; Hakenewerth, Anne M.; Celaya, Maria O.; Rycroft, Randi K.; Wike, Jennifer M.; Pearson, Melissa; Brockhouse, Judy; Mulvihill, Linda G.; Zhang, Kevin B.

    2015-01-01

    Following the Institute of Medicine's 2009 report on the national priorities for comparative effectiveness research (CER), funding for support of CER became available in 2009 through the American Recovery and Reinvestment Act. The Centers for Disease Control and Prevention (CDC) received funding to enhance the infrastructure of population-based cancer registries and to expand registry data collection to support CER. The CDC established 10 specialized registries within the National Program of Cancer Registries (NPCR) to enhance data collection for all cancers and to address targeted CER questions, including the clinical use and prognostic value of specific biomarkers. The project also included a special focus on detailed first course of treatment for cancers of the breast, colon, and rectum, as well as chronic myeloid leukemia (CML) diagnosed in 2011. This paper describes the methodology and the work conducted by the CDC and the NPCR specialized registries in collecting data for the 4 special focused cancers, including the selection of additional data variables, development of data collection tools and software modifications, institutional review board approvals, training, collection of detailed first course of treatment, and quality assurance. It also presents the characteristics of the study population and discusses the strengths and limitations of using population-based cancer registries to support CER as well as the potential future role of population-based cancer registries in assessing the quality of patient care and cancer control. PMID:25419602

  10. Characteristics, complications, and gaps in evidence-based interventions in rheumatic heart disease: the Global Rheumatic Heart Disease Registry (the REMEDY study)

    PubMed Central

    Zühlke, Liesl; Engel, Mark E.; Karthikeyan, Ganesan; Rangarajan, Sumathy; Mackie, Pam; Cupido, Blanche; Mauff, Katya; Islam, Shofiqul; Joachim, Alexia; Daniels, Rezeen; Francis, Veronica; Ogendo, Stephen; Gitura, Bernard; Mondo, Charles; Okello, Emmy; Lwabi, Peter; Al-Kebsi, Mohammed M.; Hugo-Hamman, Christopher; Sheta, Sahar S.; Haileamlak, Abraham; Daniel, Wandimu; Goshu, Dejuma Y.; Abdissa, Senbeta G.; Desta, Araya G.; Shasho, Bekele A.; Begna, Dufera M.; ElSayed, Ahmed; Ibrahim, Ahmed S.; Musuku, John; Bode-Thomas, Fidelia; Okeahialam, Basil N.; Ige, Olukemi; Sutton, Christopher; Misra, Rajeev; Abul Fadl, Azza; Kennedy, Neil; Damasceno, Albertino; Sani, Mahmoud; Ogah, Okechukwu S.; Olunuga, Taiwo; Elhassan, Huda H.M.; Mocumbi, Ana Olga; Adeoye, Abiodun M.; Mntla, Phindile; Ojji, Dike; Mucumbitsi, Joseph; Teo, Koon; Yusuf, Salim; Mayosi, Bongani M.

    2015-01-01

    Aims Rheumatic heart disease (RHD) accounts for over a million premature deaths annually; however, there is little contemporary information on presentation, complications, and treatment. Methods and results This prospective registry enrolled 3343 patients (median age 28 years, 66.2% female) presenting with RHD at 25 hospitals in 12 African countries, India, and Yemen between January 2010 and November 2012. The majority (63.9%) had moderate-to-severe multivalvular disease complicated by congestive heart failure (33.4%), pulmonary hypertension (28.8%), atrial fibrillation (AF) (21.8%), stroke (7.1%), infective endocarditis (4%), and major bleeding (2.7%). One-quarter of adults and 5.3% of children had decreased left ventricular (LV) systolic function; 23% of adults and 14.1% of children had dilated LVs. Fifty-five percent (n = 1761) of patients were on secondary antibiotic prophylaxis. Oral anti-coagulants were prescribed in 69.5% (n = 946) of patients with mechanical valves (n = 501), AF (n = 397), and high-risk mitral stenosis in sinus rhythm (n = 48). However, only 28.3% (n = 269) had a therapeutic international normalized ratio. Among 1825 women of childbearing age (12–51 years), only 3.6% (n = 65) were on contraception. The utilization of valvuloplasty and valve surgery was higher in upper-middle compared with lower-income countries. Conclusion Rheumatic heart disease patients were young, predominantly female, and had high prevalence of major cardiovascular complications. There is suboptimal utilization of secondary antibiotic prophylaxis, oral anti-coagulation, and contraception, and variations in the use of percutaneous and surgical interventions by country income level. PMID:25425448

  11. Management of paediatric Lyme disease in non-endemic and endemic areas: data from the Registry of the Italian Society for Pediatric Infectious Diseases.

    PubMed

    Esposito, S; Baggi, E; Villani, A; Norbedo, S; Pellegrini, G; Bozzola, E; Palumbo, E; Bosis, S; Nigro, G; Garazzino, S; Principi, N

    2013-04-01

    The purpose of this investigation was to determine how specialists in paediatric infectious diseases (PIDs) manage children with suspected Lyme disease (LD) by comparing their approaches in Italian endemic and non-endemic areas. A cross-sectional survey of the PID specialists participating in the Italian Society for Pediatric Infectious Disease (SITIP) Registry of LD was carried out between 1 January and 30 April 2012. A total of 160 children (80 living in endemic areas and 80 living in non-endemic areas) were diagnosed as having LD between 1 January 2005 and 31 December 2011. The clinical manifestations were erythema migrans in 130 cases (81.3 %), arthritis in 24 (15.0 %) and neuroborreliosis in six (3.8 %). Significant differences from the recommendations concerning serology and the tests to undertake were mainly observed in the children with erythema migrans, especially those living in non-endemic areas (p < 0.05). The children with erythema migrans who lived in non-endemic areas were treated with antibiotics significantly less frequently than those living in endemic areas (p < 0.05), and significantly fewer children with erythema migrans or arthritis living in non-endemic areas were treated with amoxicillin in comparison with those living in endemic regions (p < 0.05). The duration of antimicrobial therapy was significantly shorter than recommended in the children with erythema migrans or arthritis, especially those living in non-endemic areas (p < 0.05). Paediatric LD is also present in areas of Italy in which it is not considered endemic, but knowledge concerning its management is generally poor among PID specialists and characterised by enormous gaps in non-endemic areas. PMID:23109197

  12. Quality of acute stroke care improvement framework for the Paul Coverdell National Acute Stroke Registry: facilitating policy and system change at the hospital level.

    PubMed

    LaBresh, Kenneth A

    2006-12-01

    The Paul Coverdell National Acute Stroke Registry prototypes baseline data collection demonstrated a significant gap in the use of evidenced-based interventions. Barriers to the use of these interventions can be characterized as relating to lack of knowledge, attitudes, and ineffective behaviors and systems. Quality improvement programs can address these issues by providing didactic presentations to disseminate the science and peer interactions to address the lack of belief in the evidence, guidelines, and likelihood of improved patient outcomes. Even with knowledge and intention to provide evidenced-based care, the absence of effective systems is a significant behavioral barrier. A program for quality improvement that includes multidisciplinary teams of clinical and quality improvement professionals has been successfully used to carry out redesign of stroke care delivery systems. Teams are given a methodology to set goals, test ideas for system redesign, and implement those changes that can be successfully adapted to the hospital's environment. Bringing teams from several hospitals together substantially accelerates the process by sharing examples of successful change and by providing strategies to support the behavior change necessary for the adoption of new systems. The participation of many hospitals also creates momentum for the adoption of change by demonstrating observable and successful improvement. Data collection and feedback are useful to demonstrate the need for change and evaluate the impact of system change, but improvement occurs very slowly without a quality improvement program. This quality improvement framework provides hospitals with the capacity and support to redesign systems, and has been shown to improve stroke care considerably, when coupled with an Internet-based decision support registry, and at a much more rapid pace than when hospitals use only the support registry. PMID:17178313

  13. Australia and New Zealand Dialysis and Transplant Registry

    PubMed Central

    McDonald, Stephen P

    2015-01-01

    The ANZDATA Registry includes all patients treated with renal replacement therapy (RRT) throughout Australia and New Zealand. Funding is predominantly from government sources, together with the non-government organization Kidney Health Australia. Registry operations are overseen by an Executive committee, and a Steering Committee with wide representation. Data is collected from renal units throughout Australia and New Zealand on a regular basis, and forwarded to the Registry. Areas covered include demographic details, primary renal disease, type of renal replacement therapy, process measures, and a variety of outcomes. From this data collection a number of themes of work are produced. These include production of Registry reports with an extensive range of national and regional data, a suite of quality assurance reports, key process indicator (KPI) reports, and data sets for a variety of audit and research purposes. The various types of information from the ANZDATA Registry are used in a wide variety of areas, including health services planning, safety and quality programs, and clinical research projects. PMID:26097784

  14. European operative registry to avoid complications in operative gynecology.

    PubMed

    Putz, Andreas; Bohlin, Tonje; Rakovan, Martin; Putz, Ariane Maria; De Wilde, Rudy Leon

    2016-08-01

    The aim of this study is to determine how complications can be avoided in gynecological minimally invasive surgery in Europe. The Norwegian Gynecological Endoscopic Registry (NGER) facilitates medical research over a long duration. Can experiences from the Norwegian registry be used to develop a European registry to avoid complications? To answer this question, we used the NGER data from February 2013 until March 2015 to analyze the complications of gynecological endoscopy. The registry includes sociodemographic factors, related comorbidity, previous surgery, present procedure, and intraoperative complications. Postoperative complications were identified with a questionnaire administered 4 weeks after surgery. The risk factors leading to complications in gynecological endoscopy were found to be obesity, diabetes mellitus, heart disease, hypertension, previous surgery due to cervical carcinoma in situ, and low educational level. Regional differences in the complication rate were noted. National web-based operation registries such as the NGER can identify the risk factors for complications of gynecological endoscopic surgery and can help improve the outcome after surgery. The experience from NGER can be used to establish a European register. PMID:26805611

  15. 76 FR 27070 - National Institute of Allergy and Infectious Diseases;

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-05-10

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis... . Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis Panel,...

  16. 50 CFR 600.1410 - Registry process.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... 50 Wildlife and Fisheries 8 2010-10-01 2010-10-01 false Registry process. 600.1410 Section 600.1410 Wildlife and Fisheries FISHERY CONSERVATION AND MANAGEMENT, NATIONAL OCEANIC AND ATMOSPHERIC... United States § 600.1410 Registry process. (a) A person may register through the NMFS web site at...

  17. 50 CFR 600.1410 - Registry process.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... 50 Wildlife and Fisheries 12 2013-10-01 2013-10-01 false Registry process. 600.1410 Section 600.1410 Wildlife and Fisheries FISHERY CONSERVATION AND MANAGEMENT, NATIONAL OCEANIC AND ATMOSPHERIC... United States § 600.1410 Registry process. (a) A person may register through the NMFS web site at...

  18. Considerations Before Establishing an Environmental Health Registry

    PubMed Central

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

    2016-01-01

    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

  19. Oral cancer in Libya and development of regional oral cancer registries: A review

    PubMed Central

    BenNasir, E.; El Mistiri, M.; McGowan, R.; Katz, R.V.

    2015-01-01

    The aims of this paper are three-fold: (1) to summarize the current epidemiological data on oral cancer in Libya as reported in the published literature and as compared to other national oral cancer rates in the region; (2) to present both the history of the early development, and future goals, of population-based oral cancer tumor registries in Libya as they partner with the more established regional and international population-based cancer tumor registries; and, (3) to offer recommendations that will likely be required in the near future if these nascent, population-based Libyan oral cancer registries are to establish themselves as on-going registries for describing the oral cancer disease patterns and risk factors in Libya as well as for prevention and treatment. This comprehensive literature review revealed that the current baseline incidence of oral cancer in Libya is similar to those of other North Africa countries and China, but is relatively low compared to the United Kingdom, the United States, and India. The recently established Libyan National Cancer Registry Program, initiated in 2007, while envisioning five cooperating regional cancer registries, continues to operate at a relatively suboptimal level. Lack of adequate levels of national funding continue to plague its development…and the accompanying quality of service that could be provided to the Libyan people. PMID:26644751

  20. Oral cancer in Libya and development of regional oral cancer registries: A review.

    PubMed

    BenNasir, E; El Mistiri, M; McGowan, R; Katz, R V

    2015-10-01

    The aims of this paper are three-fold: (1) to summarize the current epidemiological data on oral cancer in Libya as reported in the published literature and as compared to other national oral cancer rates in the region; (2) to present both the history of the early development, and future goals, of population-based oral cancer tumor registries in Libya as they partner with the more established regional and international population-based cancer tumor registries; and, (3) to offer recommendations that will likely be required in the near future if these nascent, population-based Libyan oral cancer registries are to establish themselves as on-going registries for describing the oral cancer disease patterns and risk factors in Libya as well as for prevention and treatment. This comprehensive literature review revealed that the current baseline incidence of oral cancer in Libya is similar to those of other North Africa countries and China, but is relatively low compared to the United Kingdom, the United States, and India. The recently established Libyan National Cancer Registry Program, initiated in 2007, while envisioning five cooperating regional cancer registries, continues to operate at a relatively suboptimal level. Lack of adequate levels of national funding continue to plague its development…and the accompanying quality of service that could be provided to the Libyan people. PMID:26644751

  1. Bone loss during revision of unicompartmental to total knee arthroplasty: an analysis of implanted polyethylene thickness from the National Joint Registry data.

    PubMed

    Sarraf, Khaled M; Konan, Sujith; Pastides, Philip S; Haddad, Fares S; Oussedik, Sam

    2013-10-01

    Using the National Joint Registry (UK) database, we compared the thickness of polyethylene (PE) and the level of constraint used during primary total knee arthroplasty (TKA) versus the revision of unicondylar knee arthroplasty (UKA) to TKA. A total of 251,803 TKA procedures and 374 revision UKA-TKA procedures between 2003 and 2009 were reviewed. The commonest PE size used in TKA was 10mm, compared to 12.79 mm in the revision group. The use of constrained knee implant was required in 2.15% of primary TKA and 4.19% of UKA to TKA revisions. The revision of UKA to TKA is a more complex procedure compared to primary TKA, with a higher incidence of using constrained implants and thicker PE inserts. These findings may be useful for surgeons in their decision making. PMID:23538124

  2. Standardized cardiovascular data for clinical research, registries, and patient care: a report from the Data Standards Workgroup of the National Cardiovascular Research Infrastructure project.

    PubMed

    Anderson, H Vernon; Weintraub, William S; Radford, Martha J; Kremers, Mark S; Roe, Matthew T; Shaw, Richard E; Pinchotti, Dana M; Tcheng, James E

    2013-05-01

    Relatively little attention has been focused on standardization of data exchange in clinical research studies and patient care activities. Both are usually managed locally using separate and generally incompatible data systems at individual hospitals or clinics. In the past decade there have been nascent efforts to create data standards for clinical research and patient care data, and to some extent these are helpful in providing a degree of uniformity. Nonetheless, these data standards generally have not been converted into accepted computer-based language structures that could permit reliable data exchange across computer networks. The National Cardiovascular Research Infrastructure (NCRI) project was initiated with a major objective of creating a model framework for standard data exchange in all clinical research, clinical registry, and patient care environments, including all electronic health records. The goal is complete syntactic and semantic interoperability. A Data Standards Workgroup was established to create or identify and then harmonize clinical definitions for a base set of standardized cardiovascular data elements that could be used in this network infrastructure. Recognizing the need for continuity with prior efforts, the Workgroup examined existing data standards sources. A basic set of 353 elements was selected. The NCRI staff then collaborated with the 2 major technical standards organizations in health care, the Clinical Data Interchange Standards Consortium and Health Level Seven International, as well as with staff from the National Cancer Institute Enterprise Vocabulary Services. Modeling and mapping were performed to represent (instantiate) the data elements in appropriate technical computer language structures for endorsement as an accepted data standard for public access and use. Fully implemented, these elements will facilitate clinical research, registry reporting, administrative reporting and regulatory compliance, and patient care

  3. [Hoogendoorn and the medical registry].

    PubMed

    van Gijn, Jan; Gijselhart, Joost P

    2012-01-01

    Dirk Hoogendoorn (1914-1990) was a solo general practitioner in the village of Wijhe (eastern part of the Netherlands) from 1941, during the time of the German occupation, until 1971. From the very beginning, he combined his practice with the recording of disease patterns. He first concentrated on infectious diseases, especially whooping cough, which was the subject of his doctoral thesis. He later set up registries in two regional hospitals. When his initiative expanded to a national organisation, he became its advisor. He nonetheless continued to produce statistics on a variety of disorders as well as on surgical procedures, even more so after his retirement. The subjects ranged from traffic accidents and tonsillectomies to the discrepancy between increased body height and the unchanging height of the tennis net, but he had the most affinity with the practice of obstetrics. He stirred up much emotion by showing that a decrease in perinatal mortality was proceeding slower in the Netherlands than in other European countries, especially by suggesting a causal relationship between this lag and the high rate of Dutch home deliveries. This debate has continued to this day. PMID:23075774

  4. Patient survival and safety with biologic therapy. Results of the Mexican National Registry Biobadamex 1.0.

    PubMed

    Ventura-Ríos, Lucio; Bañuelos-Ramírez, David; Hernández-Quiroz, María del Carmen; Robles-San Román, Manuel; Irazoque-Palazuelos, Fedra; Goycochea-Robles, María Victoria

    2012-01-01

    This work reports patient treatment survival and adverse events related to Biologic Therapy (BT), identified by a multicenter ambispective registry of 2047 rheumatic patients undergoing BT and including a control group of Rheumatoid Arthritis (RA) patients not using BT. The most common diagnoses were: RA 79.09%, Ankylosing Spondilytis 7.96%, Psoriatic Arthritis 4.40%, Systemic Lupus Erythematosus 3.37%, Juvenile Idiopathic Arthritis 1.17%. A secondary analysis included 1514 cases from the total sample and was performed calculating an incidence rate of any adverse events of 178 × 1000/BT patients per year vs 1009 × 1000/control group patients per year with a 1.6 RR (95% CI 1.4-1.9). For serious adverse events the RR was: 15.4 (95% CI 3.7-63.0, P<.0001). Global BT survival was 80% at 12 months, 61% at 24 months, 52% at 36 months and 45% at 48 months and SMR: 0.23 (95% CI 0.0-49.0) for BT vs 0.00 (95% CI 0.0-0.2) for the control group. In conclusion, BT was associated to a higher infection risk and adverse events, compared to other patients. Mortality using BT was not higher than expected for general population with same gender and age. PMID:22673388

  5. Patient-reported Chiari malformation type I symptoms and diagnostic experiences: a report from the national Conquer Chiari Patient Registry database.

    PubMed

    Fischbein, Rebecca; Saling, Julia R; Marty, Paige; Kropp, Denise; Meeker, James; Amerine, Jenna; Chyatte, Michelle Renee

    2015-09-01

    Chiari malformation (CM) is a condition in which cerebellar tonsillar ectopia may manifest with various clinical presentations. This study reports from the only national, online patient registry available, the symptoms, comorbid neurocognitive and psychological conditions, and diagnostic experiences of patients living with CM type I (CM I). The current research is one component of a large investigation designed to collect information from individuals with CM through the online Conquer Chiari Patient Registry questionnaire. Analyses included descriptive statistics to study body system impact and patient diagnostic experiences. Participants were 768 individuals with CM I and were predominantly female (86.8 %) and Caucasian (93.8 %) with an average age of 35 years. Pain was the most frequently reported symptom (76.69 %) experienced prior to diagnosis with headaches implicated most often (73.44 %). Neurocognitive comorbidities included memory difficulties (43.88 %) and aphasia (43.75 %) and psychological disorders such as depression (31.77 %) and anxiety disorders (19.92 %) were reported. Average time to diagnosis from first physician visit to diagnosis was 3.43 years, and only 8.46 % of patients had previous awareness of CM. CM I diagnosis was found incidentally for 24.87 % of participants. Common misdiagnoses were classified as psychological (19.26 %) and neurological (19.26 %). Fear was the most frequent emotion elicited at the time of correct diagnosis (42.19 %). CM I can be a challenging condition for patients and physicians, during both the search for diagnosis and management of symptoms. Patient and physician education about CM I may permit early intervention and the prevention of further deterioration and patient suffering. PMID:25972139

  6. Five-year Follow-up of Patients Treated for Coronary Artery Disease in the Face of an Increasing Burden of Co-morbidity and Disease Complexity (From the NHLBI Dynamic Registry)

    PubMed Central

    Bortnick, Anna E.; Epps, Kelly C.; Selzer, Faith; Anwaruddin, Saif; Marroquin, Oscar C.; Srinivas, Vankeepuram; Holper, Elizabeth M.; Wilensky, Robert L.

    2014-01-01

    Management of coronary artery disease (CAD) has evolved over the past decade, but there are few prospective studies evaluating long-term outcomes in a real-world setting of evolving technical approaches and secondary prevention. The aim of this study was to determine how the mortality and morbidity of coronary artery disease has changed in patients who have undergone percutaneous coronary intervention (PCI), in the setting of co-morbidities and evolving management. The National Heart, Lung, and Blood Institute Dynamic Registry was a cohort study of patients undergoing PCI at various time points. Cohorts were enrolled in 1999 (cohort 2, n=2105), 2004 (cohort 4, n=2112), and 2006 (cohort 5, n= 2176), and each was followed out to 5 years. Primary outcomes were death, myocardial infarction (MI), coronary artery bypass grafting (CABG), repeat PCI, and repeat revascularization. Secondary outcomes were PCI for new obstructive lesions at 5 years, 5-year rate of death and MI stratified by the severity of coronary artery and co-morbid disease. Over time, patients were more likely to have multiple co-morbidities and more severe CAD. Despite greater disease severity, there was no significant difference in death (16.5% vs. 17.6%, adjusted hazard ratio (HR) 0.89 (0.74–1.08)), MI (11.0% vs. 10.6%, adjusted HR 0.87 (0.70–1.08)), or repeat PCI (20.4% vs. 22.2%, adjusted HR 0.98 (0.85–1.17)) at 5-year follow-up, but there was a significant decline inCABG (9.1% vs. 4.3%, adjusted HR 0.44 (0.32–0.59)). Patients with 5 co-morbidities had a 40–60% death rate at 5 years. There was a modestly high rate of repeat PCI for new lesions, indicating a potential failure of secondary prevention for this population in the face of increasing co-morbidity. Overall 5-year rates of death, MI, repeat PCI, and repeat PCI for new lesions did not change significantly in the context of increased co-morbidities and complex disease. PMID:24388624

  7. United States Transuranium and Uranium Registries

    SciTech Connect

    Kathren, R.

    1993-02-28

    The United States Transuranium and Uranium Registries are unique human tissue research programs studying the distribution, dose, and possible biological effects of the actinide elements in man, with the primary goal of assuring the adequacy of radiation protection standards for these radionuclides. The Registries research is based on radiochemical analysis of tissues collected at autopsy from voluntary donors who have documented occupational exposure to the actinides. To date, tissues, or in some cases radioanalytical results only, have been obtained from approximately 300 individuals; another 464 living individuals have volunteered to participate in the Registries research programs and have signed premortem informed consent and autopsy permissions. The Registries originated at the National Plutonium Registry which was started in 1968 as a then Atomic Energy Commission project under the aegis of a prime contractor at the Hanford site. In 1970, the name was changed to the United States Transuranium Registry to reflect a broader involvement with the higher actinides. In 1978, an administratively separate parallel registry, the United States Uranium Registry, was formed to carry out similar studies among uranium fuel cycle workers.

  8. Registries in orthopaedics.

    PubMed

    Delaunay, C

    2015-02-01

    The first nationwide orthopaedic registry was created in Sweden in 1975 to collect data on total knee arthroplasty (TKA). Since then, several countries have established registries, with varying degrees of success. Managing a registry requires time and money. Factors that contribute to successful registry management include the use of a single identifier for each patient to ensure full traceability of all procedures related to a given implant; a long-term funding source; a contemporary, rapid, Internet-based data collection method; and the collection of exhaustive data, at least for innovative implants. The effects of registries on practice patterns should be evaluated. The high cost of registries raises issues of independence and content ownership. Scandinavian countries have been maintaining orthopaedic registries for nearly four decades (since 1975). The first English-language orthopaedic registry was not created until 1998 (in New Zealand), and both the US and many European countries are still struggling to establish orthopaedic registries. To date, there are 11 registered nationwide registries on total knee and total hip replacement. The data they contain are often consistent, although contradictions occur in some cases due to major variations in cultural and market factors. The future of registries will depend on the willingness of health authorities and healthcare professionals to support the creation and maintenance of these tools. Surgeons feel that registries should serve merely to compare implants. Health authorities, in contrast, have a strong interest in practice patterns and healthcare institution performances. Striking a balance between these objectives should allow advances in registry development in the near future. PMID:25553603

  9. Methods for testing familial aggregation of diseases in population-based samples: application to Hodgkin lymphoma in Swedish registry data.

    PubMed

    Pfeiffer, R M; Goldin, L R; Chatterjee, N; Daugherty, S; Hemminki, K; Pee, D; X, L I; Gail, M H

    2004-09-01

    We use data on lymphoma in families of Hodgkin lymphoma (HL) cases from the Swedish Family Cancer Database (Hemminki et al. 2001) to illustrate survival methods for detecting familial aggregation in first degree relatives of case probands compared to first degree relatives of control probands, from registries that permit sampling of all cases. Because more than one case may occur in a given family, the first degree relatives of case probands are not necessarily independent, and we present procedures that allow for such dependence. A bootstrap procedure also accommodates matching of case and control probands by resampling the matching clusters, defined as the combined set of all first degree relatives of the matched case and control probands. Regarding families as independent sampling units leads to inferences based on "sandwich variance estimators" and accounts for dependencies from having more than one proband in a family, but not for matching. We compare these methods in analysis of familial aggregation of HL and also present simulations to compare survival analyses with analyses of binary outcome data. PMID:15469426

  10. Baseline Characteristics and Prescription Patterns of Standard Drugs in Patients with Angiographically Determined Coronary Artery Disease and Renal Failure (CAD-REF Registry)

    PubMed Central

    Reinecke, Holger; Breithardt, Günter; Engelbertz, Christiane; Schmieder, Roland E.; Fobker, Manfred; Pinnschmidt, Hans O.; Schmitz, Boris; Bruland, Philipp; Wegscheider, Karl; Pavenstädt, Hermann; Brand, Eva

    2016-01-01

    Background Chronic kidney disease (CKD) is strongly associated with coronary artery disease (CAD). We established a prospective observational nationwide multicenter registry to evaluate current treatment and outcomes in patients with both CKD and angiographically documented CAD. Methods In 32 cardiological centers 3,352 CAD patients with ≥50% stenosis in at least one coronary artery were enrolled and classified according to their estimated glomerular filtration rate and proteinuria into one of five stages of CKD or as a control group. Results 2,723 (81.2%) consecutively enrolled patients suffered from CKD. Compared to controls, CKD patients had a higher prevalence of diabetes, hypertension, peripheral artery diseases, heart failure, and valvular heart disease (each p<0.001). Myocardial infarctions (p = 0.02), coronary bypass grafting, valve replacements and pacemaker implantations had been recorded more frequently (each p<0.001). With advanced CKD, the number of diseased coronary vessels and the proportion of patients with reduced left ventricular ejection fraction (LVEF) increased significantly (both p<0.001). Percutaneous coronary interventions were performed less frequently (p<0.001) while coronary bypass grafting was recommended more often (p = 0.04) with advanced CKD. With regard to standard drugs in CAD treatment, prescriptions were higher in our registry than in previous reports, but beta-blockers (p = 0.008), and angiotensin-converting-enzyme inhibitors and/or angiotensin-receptor blockers (p<0.001) were given less often in higher CKD stages. In contrast, in the subgroup of patients with moderately to severely reduced LVEF the prescription rates did not differ between CKD stages. In-hospital mortality increased stepwise with each CKD stage (p = 0.02). Conclusions In line with other studies comprising CKD cohorts, patients’ morbidity and in-hospital mortality increased with the degree of renal impairment. Although cardiologists’ drug prescription rates

  11. Validation of primary metal-on-metal hip arthroplasties on the National Joint Registry for England, Wales and Northern Ireland using data from the London Implant Retrieval Centre: a study using the NJR dataset.

    PubMed

    Sabah, S A; Henckel, J; Cook, E; Whittaker, R; Hothi, H; Pappas, Y; Blunn, G; Skinner, J A; Hart, A J

    2015-01-01

    Arthroplasty registries are important for the surveillance of joint replacements and the evaluation of outcome. Independent validation of registry data ensures high quality. The ability for orthopaedic implant retrieval centres to validate registry data is not known. We analysed data from the National Joint Registry for England, Wales and Northern Ireland (NJR) for primary metal-on-metal hip arthroplasties performed between 2003 and 2013. Records were linked to the London Implant Retrieval Centre (RC) for validation. A total of 67,045 procedures on the NJR and 782 revised pairs of components from the RC were included. We were able to link 476 procedures (60.9%) recorded with the RC to the NJR successfully. However, 306 procedures (39.1%) could not be linked. The outcome recorded by the NJR (as either revised, unrevised or death) for a primary procedure was incorrect in 79 linked cases (16.6%). The rate of registry-retrieval linkage and correct assignment of outcome code improved over time. The rates of error for component reference numbers on the NJR were as follows: femoral head category number 14/229 (5.0%); femoral head batch number 13/232 (5.3%); acetabular component category number 2/293 (0.7%) and acetabular component batch number 24/347 (6.5%). Registry-retrieval linkage provided a novel means for the validation of data, particularly for component fields. This study suggests that NJR reports may underestimate rates of revision for many types of metal-on-metal hip replacement. This is topical given the increasing scope for NJR data. We recommend a system for continuous independent evaluation of the quality and validity of NJR data. PMID:25568407

  12. The virtual observatory registry

    NASA Astrophysics Data System (ADS)

    Demleitner, M.; Greene, G.; Le Sidaner, P.; Plante, R. L.

    2014-11-01

    In the Virtual Observatory (VO), the Registry provides the mechanism with which users and applications discover and select resources-typically, data and services-that are relevant for a particular scientific problem. Even though the VO adopted technologies in particular from the bibliographic community where available, building the Registry system involved a major standardisation effort, involving about a dozen interdependent standard texts. This paper discusses the server-side aspects of the standards and their application, as regards the functional components (registries), the resource records in both format and content, the exchange of resource records between registries (harvesting), as well as the creation and management of the identifiers used in the system based on the notion of authorities. Registry record authors, registry operators or even advanced users thus receive a big picture serving as a guideline through the body of relevant standard texts. To complete this picture, we also mention common usage patterns and open issues as appropriate.

  13. Latin American Dialysis and Transplant Registry: 2008 prevalence and incidence of end-stage renal disease and correlation with socioeconomic indexes.

    PubMed

    Cusumano, Ana M; Garcia-Garcia, Guillermo; Gonzalez-Bedat, Maria C; Marinovich, Sergio; Lugon, Jocemir; Poblete-Badal, Hugo; Elgueta, Susana; Gomez, Rafael; Hernandez-Fonseca, Fabio; Almaguer, Miguel; Rodriguez-Manzano, Sandra; Freire, Nelly; Luna-Guerra, Jorge; Rodriguez, Gaspar; Bochicchio, Tommaso; Cuero, Cesar; Cuevas, Dario; Pereda, Carlos; Carlini, Raul

    2013-05-01

    In 2008, 563,294,000 people were living in Latin America (LA), of which 6.6% were older than 65. The region is going through a fast demographic and epidemiologic transition process, in the context of an improvement in socio-economic indices. The Latin American Dialysis and Renal Transplant Registry has collected data since 1991, through an annual survey completed by 20 affiliated National Societies. Renal replacement treatment (RRT) prevalence and incidence showed an increase year by year. The prevalence rate (in all modalities) correlated with the World Bank country classification by income and the epidemiologic transition stage the countries were experiencing. RRT prevalence and kidney transplantation rates correlated significantly with gross national income (GNI), health expenditure in constant dollars (HeExp), % older than 65, life expectancy at birth, and % of the population living in urban settings. Kidney transplantation increased also, year by year, with more than 50% of transplants performed using kidneys from deceased donors. Double transplants were performed in six countries. RRT prevalence and incidence increased in LA, and are associated with indexes reflecting higher and more evenly distributed national wealth (GNI and HeExp), and the stage of demographic and epidemiological transition. PMID:25018980

  14. Effect of Warfarin Treatment on Survival of Patients With Pulmonary Arterial Hypertension (PAH) in the Registry to Evaluate Early and Long-Term PAH Disease Management (REVEAL)

    PubMed Central

    Preston, Ioana R.; Roberts, Kari E.; Miller, Dave P.; Sen, Ginny P.; Selej, Mona; Benton, Wade W.; Hill, Nicholas S.

    2015-01-01

    Background— Long-term anticoagulation is recommended in idiopathic pulmonary arterial hypertension (IPAH). In contrast, limited data support anticoagulation in pulmonary arterial hypertension (PAH) associated with systemic sclerosis (SSc-PAH). We assessed the effect of warfarin anticoagulation on survival in IPAH and SSc-PAH patients enrolled in Registry to Evaluate Early and Long-term PAH Disease Management (REVEAL), a longitudinal registry of group I PAH. Methods and Results— Patients who initiated warfarin on study (n=187) were matched 1:1 with patients never on warfarin, by enrollment site, etiology, and diagnosis status. Descriptive analyses were conducted to compare warfarin users and nonusers by etiology. Survival analyses with and without risk adjustment were performed from the time of warfarin initiation or a corresponding quarterly update in matched pairs to avoid immortal time bias. Time-varying covariate models were used as sensitivity analyses. Mean warfarin treatment was 1 year; mean international normalized ratios were 1.9 (IPAH) and 2.0 (SSc-PAH). Two-thirds of patients initiating warfarin discontinued treatment before the last study assessment. There was no survival difference with warfarin in IPAH patients (adjusted hazard ratio, 1.37; P=0.21) or in SSc-PAH patients (adjusted hazard ratio, 1.60; P=0.15) in comparison with matched controls. However, SSc-PAH patients receiving warfarin within the previous year (hazard ratio, 1.57; P=0.031) or any time postbaseline (hazard ratio, 1.49; P=0.046) had increased mortality in comparison with warfarin-naïve patients. Conclusions— No significant survival advantage was observed in IPAH patients who started warfarin. In SSc-PAH patients, long-term warfarin was associated with poorer survival than in patients not receiving warfarin, even after adjusting for confounders. Clinical Trial Registration— URL: http://www.clinicaltrials.gov. Unique identifier: NCT00370214. PMID:26510696

  15. Analysis of pregnancy and infant health outcomes among women in the National Smallpox Vaccine in Pregnancy Registry who received Anthrax Vaccine Adsorbed.

    PubMed

    Conlin, Ava Marie S; Bukowinski, Anna T; Gumbs, Gia R

    2015-08-26

    The National Smallpox Vaccine in Pregnancy Registry (NSVIPR) actively follows women inadvertently vaccinated with smallpox vaccine during or shortly before pregnancy to evaluate their reproductive health outcomes. Approximately 65% of NSVIPR participants also inadvertently received Anthrax Vaccine Adsorbed (AVA) while pregnant, providing a ready opportunity to evaluate pregnancy and infant health outcomes among these women. AVA-exposed pregnancies were ascertained using NSVIPR and electronic healthcare data. Rates of pregnancy loss and infant health outcomes, including major birth defects, were compared between AVA-exposed and AVA-unexposed pregnancies. Analyses included AVA-exposed and AVA-unexposed pregnant women who also received smallpox vaccine 28 days prior to or during pregnancy. Rates of adverse outcomes among the AVA-exposed group were similar to or lower than expected when compared with published reference rates and the AVA-unexposed population. The findings provide reassurance of the safety of AVA when inadvertently received by a relatively young and healthy population during pregnancy. PMID:26049005

  16. Conditional survival among patients with adrenal cortical carcinoma determined using a national population-based surveillance, epidemiology, and end results registry

    PubMed Central

    Xiao, Wen-jun; Zhu, Yao; Dai, Bo; Zhang, Hai-liang; Shi, Guo-hai; Shen, Yi-jun; Zhu, Yi-ping; Ye, Ding-wei

    2015-01-01

    Surgical excision is essential for management of the rare and aggressive neoplasm adrenal cortical carcinoma (ACC). Five-year overall survival (OS) after surgery for ACC is dependent on disease stage, but for all stages the risk of death declines with time after surgery. We calculated the effect of post-surgical duration on conditional survival (CS) among ACC patients. A total of 641 patients with M0 ACC were selected from the Surveillance, Epidemiology, and End Results (SEER) registry (1988–2012). OS for the entire cohort at 1, 2, 3, 4, 5 and 6 years was 81.4%, 66.8%, 56.3%, 50.3%, 47.2% and 44.3%, respectively. CS for an additional year given prior survival for 0, 1, 2, 3, 4 or 5 years was 81.4%, 81.1%, 83.0%, 87.5%, 93.4% and 93.4%, respectively. Age, tumor stage, tumor grade and marital status affected OS and CS. Increases in 1-year CS over time were more pronounced in patients with poorer prognostic factors. With longer follow-up, tumor stage- and grade-dependent differences in CS decreased or even disappeared. CS may provide more meaningful life expectancy predictions for survivors of ACC than conventional survival analysis. PMID:26510907

  17. Definition, epidemiology and registries of pulmonary hypertension.

    PubMed

    Awdish, R; Cajigas, H

    2016-05-01

    Pulmonary arterial hypertension (PAH) is a subcategory of pulmonary hypertension (PH) that comprises a group of disorders with similar pulmonary vascular pathology. Though PH is common, the estimated incidence of IPAH is 1-3 cases per million, making it a rare disease. The hemodynamic definition of PAH is a mean pulmonary artery pressure at rest >OR = 25 mm Hg in the presence of a pulmonary capillary wedge pressure disease that exhibits clinical overlap with a common syndrome necessitated the creation of registries. These registries have been indispensable in the characterization and mapping of the natural history of the disease. Equations and risk calculators derived from registries have given clinicians a basis for risk stratification and prognostication. The sequential accumulation of data since the registries began in the 1980s allows for comparisons to be made. Patients who are differentiated by treatment eras and environments can be contrasted. Variability among inclusion criteria similarly allows for comparisons of these subpopulations. This article provides an overview of available registries, highlights insights provided by each and discusses key issues around the interpretation and extrapolation of data from PAH registries. Registries have allowed us to appreciate the improvement in survival afforded by modern therapy and enhanced detection of this disease. Moving forward, a more global approach to registries is needed, as is enhanced collaboration and centralization. PMID:26438630

  18. Translating national childhood immunization guidelines to a computer-based reminder recall system within an immunization registry.

    PubMed Central

    Wang, D.; Jenders, R. A.; Dasgupta, B.

    1999-01-01

    To translate national childhood immunization guidelines to a computer-based reminder recall system, hierarchical system architecture design and combined approach of tabular and procedural knowledge representation are taken. Nested branches with hierarchical combinations of single antecedent variables are used to avoid logical incompleteness, redundancy and inconsistency. Mapping to the local electronic medical vocabulary is implemented to facilitate the integration with the local information system architecture. 26 second-level modules with 195 original branches and 121 final branches after pruning are encoded. 99.67% of the reminders are confirmed to be correct by SQL query. PMID:10566510

  19. Renal replacement therapy in Europe: a summary of the 2011 ERA–EDTA Registry Annual Report

    PubMed Central

    Noordzij, Marlies; Kramer, Anneke; Abad Diez, José M.; Alonso de la Torre, Ramón; Arcos Fuster, Emma; Bikbov, Boris T.; Bonthuis, Marjolein; Bouzas Caamaño, Encarnación; Čala, Svetlana; Caskey, Fergus J.; Castro de la Nuez, Pablo; Cernevskis, Harijs; Collart, Frederic; Díaz Tejeiro, Rafael; Djukanovic, Ljubica; Ferrer-Alamar, Manuel; Finne, Patrik; García Bazaga, María de los Angelos; Garneata, Liliana; Golan, Eliezer; Gonzalez Fernández, Raquel; Heaf, James G.; Hoitsma, Andries; Ioannidis, George A.; Kolesnyk, Mykola; Kramar, Reinhard; Lasalle, Mathilde; Leivestad, Torbjørn; Lopot, Frantisek; van de Luijtgaarden, Moniek W.M.; Macário, Fernando; Magaz, Ángela; Martín Escobar, Eduardo; de Meester, Johan; Metcalfe, Wendy; Ots-Rosenberg, Mai; Palsson, Runolfur; Piñera, Celestino; Pippias, Maria; Prütz, Karl G.; Ratkovic, Marina; Resić, Halima; Rodríguez Hernández, Aurelio; Rutkowski, Boleslaw; Spustová, Viera; Stel, Vianda S.; Stojceva-Taneva, Olivera; Süleymanlar, Gültekin; Wanner, Christoph; Jager, Kitty J.

    2014-01-01

    Background This article provides a summary of the 2011 ERA–EDTA Registry Annual Report (available at www.era-edta-reg.org). Methods Data on renal replacement therapy (RRT) for end-stage renal disease (ESRD) from national and regional renal registries in 30 countries in Europe and bordering the Mediterranean Sea were used. From 27 registries, individual patient data were received, whereas 17 registries contributed data in aggregated form. We present the incidence and prevalence of RRT, and renal transplant rates in 2011. In addition, survival probabilities and expected remaining lifetimes were calculated for those registries providing individual patient data. Results The overall unadjusted incidence rate of RRT in 2011 among all registries reporting to the ERA–EDTA Registry was 117 per million population (pmp) (n = 71.631). Incidence rates varied from 24 pmp in Ukraine to 238 pmp in Turkey. The overall unadjusted prevalence of RRT for ESRD on 31 December 2011 was 692 pmp (n = 425 824). The highest prevalence was reported by Portugal (1662 pmp) and the lowest by Ukraine (131 pmp). Among all registries, a total of 22 814 renal transplantations were performed (37 pmp). The highest overall transplant rate was reported from Spain, Cantabria (81 pmp), whereas the highest rate of living donor transplants was reported from Turkey (39 pmp). For patients who started RRT between 2002 and 2006, the unadjusted 5-year patient survival on RRT was 46.8% [95% confidence interval (CI) 46.6–47.0], and on dialysis 39.3% (95% CI 39.2–39.4). The unadjusted 5-year patient survival after the first renal transplantation performed between 2002 and 2006 was 86.7% (95% CI 86.2–87.2) for kidneys from deceased donors and 94.3% (95% CI 93.6–95.0) for kidneys from living donors. PMID:25852881

  20. Adjuvant Brachytherapy Removes Survival Disadvantage of Local Disease Extension in Stage IIIC Endometrial Cancer: A SEER Registry Analysis

    SciTech Connect

    Rossi, Peter J. Jani, Ashesh B.; Horowitz, Ira R.; Johnstone, Peter A.S.

    2008-01-01

    Purpose: To assess the role of radiotherapy (RT) in women with Stage IIIC endometrial cancer. Methods and Materials: The 17-registry Survival, Epidemiology, and End Results (SEER) database was searched for patients with lymph node-positive non-Stage IV epithelial endometrial cancer diagnosed and treated between 1988 and 1998. Two subgroups were identified: those with organ-confined Stage IIIC endometrial cancer and those with Stage IIIC endometrial cancer with direct extension of the primary tumor. RT was coded as external beam RT (EBRT) or brachytherapy (BT). Observed survival (OS) was reported with a minimum of 5 years of follow-up; the survival curves were compared using the log-rank test. Results: The therapy data revealed 611 women with Stage IIIC endometrial cancer during this period. Of these women, 51% were treated with adjuvant EBRT, 21% with EBRT and BT, and 28% with no additional RT (NAT). Of the 611 patients, 293 had organ-confined Stage IIIC endometrial cancer and 318 patients had Stage IIIC endometrial cancer with direct extension of the primary tumor. The 5-year OS rate for all patients was 40% with NAT, 56% after EBRT, and 64% after EBRT/BT. Adjuvant RT improved survival compared with NAT (p <0.001). In patients with organ-confined Stage IIIC endometrial cancer, the 5-year OS rate was 50% for NAT, 64% for EBRT, and 67% for EBRT/BT. Again, adjuvant RT contributed to improved survival compared with NAT (p = 0.02). In patients with Stage IIIC endometrial cancer and direct tumor extension, the 5-year OS rate was 34% for NAT, 47% for EBRT, and 63% for EBRT/BT. RT improved OS compared with NAT (p <0.001). Also, in this high-risk subgroup, adding BT to EBRT was superior to EBRT alone (p = 0.002). Conclusion: Women with Stage IIIC endometrial cancer receiving adjuvant EBRT and EBRT/BT had improved OS compared with patients receiving NAT. When direct extension of the primary tumor was present, the addition of BT to EBRT was even more beneficial.

  1. 2016 National Rheumatic Fever Week: The status of rheumatic heart disease in South Africa.

    PubMed

    Mayosi, Bongani M

    2016-08-01

    There is evidence of early progress in the efforts to eliminate acute rheumatic fever (ARF) and control rheumatic heart disease (RHD) in South Africa. The caseload of ARF and RHD in paediatric units appears to be falling in some provinces such as Gauteng, and the mortality attributed to rheumatic heart disease at a population level has fallen from 1.3/100 000 in 2001 to 0.7/100 000 in 2012. However, the incidence of congestive heart failure due to RHD in adults remains high (~25/100 000/year) in Gauteng Province, and is associated with a high case fatality rate of up to 35% in 6 months. There is a need to intensify the application of comprehensive interventions to enhance the primary and secondary prevention and treatment of ARF/RHD in a registry-based national programme. PMID:27499394

  2. Systemic Autoimmune, Rheumatic Diseases and Coinciding Psoriasis: Data from a Large Single-Centre Registry and Review of the Literature

    PubMed Central

    Bazsó, Anna; Szodoray, Péter; Szappanos, Ágnes; Korda, Judit; Pálfi, Patrícia; Kiss, Emese; Poór, Gyula

    2015-01-01

    Psoriasis is a systemic immune-inflammatory disease characterized by chronic or recurrent skin symptoms, psoriatic arthritis, enthesopathy, and uveitis. Psoriasis has recently been published to appear with various autoimmune disorders, but the coexistence has been systematically reviewed by only few studies until now. In the present study, charts and electronic database of 4344 patients with various systemic autoimmune disorders, under regular medical control at our department, were reviewed retrospectively searching for association with psoriasis. Hereby, we demonstrate 25 psoriatic patients coinciding with various systemic autoimmune diseases. The coexistence of psoriasis and autoimmune diseases resulted in the worsening of the clinical outcome of the autoimmune diseases as indicated by higher frequency and dosages of glucocorticoid use, need for biologicals, and other comorbidities. These results suggest common environmental and genetic background as well as therapeutic possibilities in the future. PMID:26339139

  3. Adherence to guidelines: A national audit of the management of acute upper gastrointestinal bleeding. The REASON registry

    PubMed Central

    Lu, Yidan; Barkun, Alan N; Martel, Myriam

    2014-01-01

    OBJECTIVES: To assess process of care in nonvariceal upper gastrointestinal bleeding (NVUGIB) using a national cohort, and to identify predictors of adherence to ‘best practice’ standards. METHODS: Consecutive charts of patients hospitalized for acute upper gastrointestinal bleeding across 21 Canadian hospitals were reviewed. Data regarding initial presentation, endoscopic management and outcomes were collected. Results were compared with ‘best practice’ using established guidelines on NVUGIB. Adherence was quantified and independent predictors were evaluated using multivariable analysis. RESULTS: Overall, 2020 patients (89.4% NVUGIB, variceal in 10.6%) were included (mean [± SD] age 66.3±16.4 years; 38.4% female). Endoscopy was performed in 1612 patients: 1533 with NVUGIB had endoscopic lesions (63.1% ulcers; high-risk stigmata in 47.8%). Early endoscopy was performed in 65.6% and an assistant was present in 83.5%. Only 64.5% of patients with high-risk stigmata received endoscopic hemostasis; 9.8% of patients exhibiting low-risk stigmata also did. Intravenous proton pump inhibitor was administered after endoscopic hemostasis in 95.7%. Rebleeding and mortality rates were 10.5% and 9.4%, respectively. Multivariable analysis revealed that low American Society of Anesthesiologists score patients had fewer assistants present during endoscopy (OR 0.63 [95% CI 0.48 to 0.83), a hemoglobin level <70 g/L predicted inappropriate high-dose intravenous proton pump inhibitor use in patients with low-risk stigmata, and endoscopies performed during regular hours were associated with longer delays from presentation (OR 0.33 [95% CI 0.24 to 0.47]). CONCLUSION: There was variability between the process of care and ‘best practice’ in NVUGIB. Certain patient and situational characteristics may influence guideline adherence. Dissemination initiatives must identify and focus on such considerations to improve quality of care. PMID:25314356

  4. Data available from birth and death registries and cancer registries in the United States

    SciTech Connect

    Wallin, B.L. |; Houser, A.R.; Merrill, D.W.; Selvin, S. |

    1994-01-01

    In the United States, cancer registries have been compiling data for decades, and state vital statistics offices have been compiling birth and death data for nearly a century. Although this information has been well used for disease surveillance and various studies, it could be better exploited by making it more readily available, reducing the duplication of effort that occurs when researchers at the private, city, county, state, and federal levels work separately on their data collection and disease investigations. This report summarizes the nationwide availability of birth and death records and cancer registry data, with particular emphasis on subcounty geographic detail, such as zip code and census tract. Birth and death data are available at the county level for the entire United States from the National Center for Health Statistics. However, county level data are inadequate for small area studies of potential environmental hazards. Hazards of current interest to the Department of Energy (DOE) include DOE facilities, nuclear power plants, and sources of electromagnetic radiation such as broadcasting towers and power lines.

  5. Transcatheter valve therapy registry is a model for medical device innovation and surveillance.

    PubMed

    Carroll, John D; Shuren, Jeff; Jensen, Tamara Syrek; Hernandez, John; Holmes, David; Marinac-Dabic, Danica; Edwards, Fred H; Zuckerman, Bram D; Wood, Larry L; Kuntz, Richard E; Mack, Michael J

    2015-02-01

    Heart valve diseases are increasingly prevalent, especially in people older than age seventy. Many of these elderly people have other comorbid conditions, making them poor candidates for surgical treatment of heart valve diseases. Since 2011 such patients have been eligible to receive new nonsurgical heart valve treatments approved by the Food and Drug Administration (FDA) and covered by Medicare. This article examines the Transcatheter Valve Therapy Registry, which captures clinical information on all US patients undergoing new nonsurgical heart valve treatments. The registry has patient-level data from more than 27,000 patients treated with the novel devices. Patient- and procedure-related data are gathered from hospitals, patient-reported outcomes are assessed pre- and postprocedure, and longer-term data on mortality and repeat hospitalization are provided by linking the registry's data to Medicare patient data. The registry is a model of collaboration among professional societies, the FDA, the Centers for Medicare and Medicaid Services, hospitals, patients, and the medical device industry. It has been used to support Medicare coverage decisions, expand device indications, provide comprehensive device surveillance, and establish national quality benchmarks. Beyond having it serve as a collaborative model, future goals for the registry include shortening the FDA-approval timeline for devices, providing data for decision-making tools for patients, and public reporting of hospital performance. PMID:25646114

  6. Public health assessments completed. Agency for Toxic Substances and Disease Registry (ATSDR), Department of Health and Human Services (HHS). Notice.

    PubMed

    1999-01-28

    This notice announces those sites for which ATSDR has completed public health assessments during the period April 1998 through September 1998. This list includes sites that are on or proposed for inclusion on the National Priorities List (NPL), and includes sites for which assessments were prepared in response to requests from the public. PMID:10557607

  7. Cerebrovascular Disease Is Associated with Outcomes after Total Knee Arthroplasty: A U.S. Total Joint Registry Study

    PubMed Central

    Singh, Jasvinder A.; Lewallen, David G.

    2013-01-01

    We assessed the association of cerebrovascular disease with patient-reported outcomes (PROs) of moderate-severe activity limitation and moderate-severe pain at 2- and 5-years after primary total knee arthroplasty (TKA) using multivariable-adjusted logistic regression. 7,139 primary and 4,234 revision TKAs were included. Compared to the patients without cerebrovascular disease, those with cerebrovascular disease had a higher odds ratio (OR) of moderate-severe limitation at 2-years and 5-years, 1.32 (95% confidence interval [CI]: 1.02, 1.72; P=0.04) and 1.83 (95% CI: 1.32, 2.55; P<0.001). No significant associations were noted with moderate-severe pain at 2-years or 5-years. In conclusion, we found that cerebrovascular disease is independently associated with pain and function outcomes after primary TKA. This should be taken into consideration when discussing expected outcomes of TKA with patients. PMID:23664282

  8. Predictors of Survival from Perioperative Cardiopulmonary Arrests: A Retrospective Analysis of 2,524 Events from the National Registry of Cardiopulmonary Resuscitation

    PubMed Central

    Ramachandran, Satya Krishna; Mhyre, Jill; Kheterpal, Sachin; Christensen, Robert; Tallman, Kristen; Morris, Michelle; Chan, Paul S

    2013-01-01

    Background Perioperative cardio-pulmonary arrests are uncommon and little is known about rates and predictors of in-hospital survival. Methods Using the Get-With-The-Guidelines – Resuscitation national cardiopulmonary resuscitation registry, we identified all patients aged 18 years or older who experienced an index, pulseless cardiac arrest in the operating room or within 24 hours postoperatively. The primary outcome was survival to hospital discharge, and the secondary outcome was neurologically intact recovery among survivors. Multivariable logistic regression models using generalized estimating equation models were used to identify independent predictors of survival and neurologically intact survival. Results There were 2,524 perioperative cardiopulmonary arrests identified from 234 hospitals. The overall rate of survival to discharge was 31.7% (799/2,524), including 41.8% (254/608) for ventricular tachycardia and ventricular fibrillation, 30.5% (296/972) for asystole, and 26.4% (249/944) for pulseless electrical activity. Ventricular fibrillation and pulseless ventricular tachycardia were independently associated with improved survival. Asystolic arrests occurring in the operating room and post-anesthesia care unit were associated with improved survival when compared to other perioperative locations. Among patients with neurological status assessment at discharge, the rate of neurologically intact survival was 64.0% (473/739). Pre-arrest neurological status at admission, patient age, inadequate natural airway, pre-arrest ventilatory support, duration of event and event location were significant predictors of neurological status at discharge. Conclusion Among patients with a perioperative cardiac arrest, 1 in 3 survived to hospital discharge, and good neurological outcome was noted in 2 out of 3 survivors. PMID:23838723

  9. Early Mortality Was Highly and Strongly Associated with Functional Status in Incident Japanese Hemodialysis Patients: A Cohort Study of the Large National Dialysis Registry

    PubMed Central

    Ohira, Seiji; Iseki, Kunitoshi; Tsubakihara, Yoshiharu

    2016-01-01

    Background Although dialysis is typically started in an effort to prolong survival, mortality is reportedly high in the first few months. However, it remains unclear whether this is true in Japanese patients who tend to have a better prognosis than other ethnicities, and if health conditions such as functional status (FS) at initiation of dialysis influence prognosis. Methods We investigated the epidemiology of early death and its association with FS using Japanese national registry data in 2007, which included 35,415 patients on incident dialysis and 7,664 with FS data. The main outcome was early death, defined as death within 3 months after initiation of hemodialysis (HD). The main predictor was FS at initiation of HD. Levels of functional disability were categorized as follows: severe (bedridden), moderate (overt difficulties in exerting basic activities of daily living), or mild/none (none or some functional disabilities). Results Early death remained relatively common, especially among elderly patients (overall: 7.1%; those aged ≥80 years: 15.8%). Severely and even only a moderately impaired FS were significantly associated with early death after starting dialysis (adjusted risk ratios: 3.93 and 2.38, respectively). The incidence of early death in those with impaired FS increased with age (36.5% in those with severely impaired FS and aged ≥80 years). Conclusions Early death after starting dialysis was relatively common, especially among the elderly, even in Japanese patients. Further, early death was significantly associated with impaired FS at initiation of HD. PMID:27270615

  10. Validity of asthma diagnoses in the Danish National Registry of Patients, including an assessment of impact of misclassification on risk estimates in an actual dataset

    PubMed Central

    Jensen, Annette Østergaard; Nielsen, Gunnar Lauge; Ehrenstein, Vera

    2010-01-01

    Objective: Asthma diagnoses recorded in the Danish National Registry of Patients (DNRP) are a misclassified measure of the actual asthma status. We quantified this misclassification and examined its impact on the results of an epidemiologic study on asthma. Study design and setting: We validated the DNRP asthma diagnoses against records of asthma diagnosed at medical examinations conducted during mandatory conscription evaluation. We had data on 22,177 male conscripts who were born from January 1st, 1977 to December 31st, 1983, in a conscription district in northern Denmark. We obtained asthma diagnoses recorded among the conscripts in the DNRP from January 1st, 1977 through December 31st, 2003. We estimated sensitivity, specificity, and positive predictive value (PPV) of the DNRP asthma diagnoses. We then conducted sensitivity analysis to quantify the impact of nondifferential misclassification on the rate ratios measuring the association between asthma and risks of different skin cancers. Results: The sensitivity of the DNRP for detecting an asthma diagnosis was 0.44 (95% confidence interval [CI]: 0.42–0.47), the specificity was 0.98 (95% CI: 0.98–0.99) and the PPV was 0.65 (95% CI: 0.62–0.68). Both direct and inverse associations between asthma and the different types of skin cancers became more pronounced after correcting for the misclassification. Conclusion: The DNRP registered asthma diagnosis may be used to measure asthma status in epidemiologic studies seeking to estimate relative effects of asthma. Even at low values of DNRP sensitivity of asthma diagnoses were not sufficient to nullify observed relative associations in an actual dataset. The specificity of DNRP asthma diagnosis is high. PMID:20865105

  11. Influence of Differently Licensed KIR2DL1-Positive Natural Killer Cells in Transplant Recipients with Acute Leukemia: A Japanese National Registry Study.

    PubMed

    Arima, Nobuyoshi; Nakamura, Fumiaki; Yabe, Toshio; Tanaka, Junji; Fuji, Shigeo; Ohashi, Kazuteru; Fukuda, Takahiro; Miyamura, Koichi; Iwato, Koji; Eto, Tetsuya; Mori, Takehiko; Kobayashi, Naoki; Hoshino, Takumi; Kato, Chiaki; Kanamori, Heiwa; Nakamae, Hirohisa; Atsuta, Yoshiko; Morishima, Yasuo; Kanda, Yoshinobu

    2016-03-01

    Licensing by self MHC class I ligands is required for proper natural killer (NK) cell response. NK cells with inhibitory killer cell immunoglobulin-like receptors for nonself MHC exhibit transient alloreactivity after hematopoietic stem cell transplantation (HSCT). We analyzed 3866 recipients in the Japan national registry who underwent their first allogeneic HSCT for acute myeloid leukemia (AML) or acute lymphoblastic leukemia (ALL) from HLA-A, -B, and -DRB1 allele-genomatched unrelated donors. By classifying them into 5 independent groups based on HLA-C group matching and assumed donor NK cell status, we found that for HLA-C-matched HSCT for AML in HLA-C1/C1 recipients, in whom transient alloreactivity against HLA-C2-negative leukemic cells was expected, the relapse rate was significantly lower than it was in HLA-C-matched HSCT for AML in HLA-C1/C2 recipients (hazard ratio [HR], .72; P = .011). This difference was not observed in HLA-C-matched HSCT for ALL. Compared with HLA-C-matched HSCT, significantly higher mortality was observed in HLA-C1/C1 AML patients who received transplants from HLA-C-mismatched HLA-C1/C1 donors (HR, 1.37; P = .001) and in HLA-C1/C1 ALL patients who received transplants from HLA-C2-positive donors (HR, 2.13; P = .005). In conclusion, donor selection based on leukemic subtype and donor HLA-C group matching improves transplantation outcome after HLA-C-mismatched HSCT. PMID:26456260

  12. Childhood cancer incidence patterns by race, sex and age for 2000-2006: a report from the South African National Cancer Registry.

    PubMed

    Erdmann, Friederike; Kielkowski, Danuta; Schonfeld, Sara J; Kellett, Patricia; Stanulla, Martin; Dickens, Caroline; Kaatsch, Peter; Singh, Elvira; Schüz, Joachim

    2015-06-01

    Higher childhood cancer incidence rates are generally reported for high income countries although high quality information on descriptive patterns of childhood cancer incidence for low or middle income countries is limited, particularly in Sub-Saharan Africa. There is a need to quantify global differences by cancer types, and to investigate whether they reflect true incidence differences or can be attributed to under-diagnosis or under-reporting. For the first time, we describe childhood cancer data reported to the pathology report-based National Cancer Registry of South Africa in 2000-2006 and compare our results to incidence data from Germany, a high income country. The overall age-standardized incidence rate (ASR) for South Africa in 2000-2006 was 45.7 per million children. We observed substantial differences by cancer types within South Africa by racial group; ASRs tended to be 3-4-fold higher in South African Whites compared to Blacks. ASRs among both Black and White South Africans were generally lower than those from Germany with the greatest differences observed between the Black population in South Africa and Germany, although there was marked variation between cancer types. Age-specific rates were particularly low comparing South African Whites and Blacks with German infants. Overall, patterns across South African population groups and in comparison to Germans were similar for boys and girls. Genetic and environmental reasons may probably explain rather a small proportion of the observed differences. More research is needed to understand the extent to which under-ascertainment and under-diagnosis of childhood cancers drives differences in observed rates. PMID:25363616

  13. Rising inequality in mortality among working-age men and women in Sweden: a national registry-based repeated cohort study, 1990–2007

    PubMed Central

    Kondo, Naoki; Rostila, Mikael; Yngwe, Monica Åberg

    2014-01-01

    Background In the past two decades, health inequality has persisted or increased in states with comprehensive welfare. Methods We conducted a national registry-based repeated cohort study with a 3-year follow-up between 1990 and 2007 in Sweden. Information on all-cause mortality in all working-age Swedish men and women aged between 30 and 64 years was collected. Data were subjected to temporal trend analysis using joinpoint regression to statistically confirm the trajectories observed. Results Among men, age-standardised mortality rate decreased by 38.3% from 234.9 to 145 (per 100 000 population) over the whole period in the highest income quintile, whereas the reduction was only 18.3% (from 774.5 to 632.5) in the lowest quintile. Among women, mortality decreased by 40% (from 187.4 to 112.5) in the highest income group, but increased by 12.1% (from 280.2 to 314.2) in the poorest income group. Joinpoint regression identified that the differences in age-standardised mortality between the highest and the lowest income quintiles decreased among men by 18.85 annually between 1990 and 1994 (p trend=0.02), whereas it increased later, with a 2.88 point increase per year (p trend <0.0001). Among women, it continuously increased by 9.26/year (p trend <0.0001). In relative terms, age-adjusted mortality rate ratios showed a continuous increase in both genders. Conclusions Income-based inequalities among working-age male and female Swedes have increased since the late 1990s, whereas in absolute terms the increase was less remarkable among men. Structural and behavioural factors explaining this trend, such as the economic recession in the early 1990s, should be studied further. PMID:25143429

  14. Extracorporeal membrane oxygenation in children with heart disease and del22q11 syndrome: a review of the Extracorporeal Life Support Organization Registry.

    PubMed

    Prodhan, P; Gossett, J M; Rycus, P T; Gupta, P

    2015-11-01

    The study objective was to evaluate outcomes among children with del22q11 (DiGeorge) syndrome supported on ECMO for heart disease. The ELSO registry database was queried to include all children <18 years undergoing heart surgery for either common atrio-ventricular canal, tetralogy of Fallot, truncus arteriosus or transposition of the great vessels and interrupted aortic arch and requiring ECMO, from 1998-2011. The outcomes evaluated included mortality, ECMO duration and length of hospital stay in patients with del22q11 syndrome and with no del22q11 syndrome. Eighty-eight ECMO runs occurred in children with del22q11 syndrome while 2694 ECMO runs occurred in children without del22q11 syndrome. For patients with heart defects receiving ECMO, del22q11 syndrome did not confer a significant mortality risk or an increased risk of infectious complications before or while on ECMO support. Neither the duration of ECMO nor mechanical ventilation prior to ECMO deployment were prolonged in patients with del22q11 syndrome compared to the controls. PMID:25795680

  15. Pulmonary embolism and 3-month outcomes in 4036 patients with venous thromboembolism and chronic obstructive pulmonary disease: data from the RIETE registry

    PubMed Central

    2013-01-01

    Background Patients with chronic obstructive pulmonary disease (COPD) have a modified clinical presentation of venous thromboembolism (VTE) but also a worse prognosis than non-COPD patients with VTE. As it may induce therapeutic modifications, we evaluated the influence of the initial VTE presentation on the 3-month outcomes in COPD patients. Methods COPD patients included in the on-going world-wide RIETE Registry were studied. The rate of pulmonary embolism (PE), major bleeding and death during the first 3 months in COPD patients were compared according to their initial clinical presentation (acute PE or deep vein thrombosis (DVT)). Results Of the 4036 COPD patients included, 2452 (61%; 95% CI: 59.2-62.3) initially presented with PE. PE as the first VTE recurrence occurred in 116 patients, major bleeding in 101 patients and mortality in 443 patients (Fatal PE: first cause of death). Multivariate analysis confirmed that presenting with PE was associated with higher risk of VTE recurrence as PE (OR, 2.04; 95% CI: 1.11-3.72) and higher risk of fatal PE (OR, 7.77; 95% CI: 2.92-15.7). Conclusions COPD patients presenting with PE have an increased risk for PE recurrences and fatal PE compared with those presenting with DVT alone. More efficient therapy is needed in this subtype of patients. PMID:23865769

  16. Adjuvant high-dose chemotherapy with autologous hematopoietic stem cell support for high-risk primary breast cancer: results from the Italian national registry.

    PubMed

    Pedrazzoli, Paolo; Martinelli, Giovanni; Gianni, Alessandro Massimo; Da Prada, Gian Antonio; Ballestrero, Alberto; Rosti, Giovanni; Frassineti, Giovanni Luca; Aieta, Michele; Secondino, Simona; Cinieri, Saverio; Fedele, Roberta; Bengala, Carmelo; Bregni, Marco; Grasso, Donatella; De Giorgi, Ugo; Lanza, Francesco; Castagna, Luca; Bruno, Barbara; Martino, Massimo

    2014-04-01

    The efficacy of high-dose chemotherapy (HDC) and autologous hemopoietic progenitor cell transplantation (AHPCT) for breast cancer (BC) patients has been an area of intense controversy among the medical oncology community. The aim of this study was to assess toxicity and efficacy of this procedure in a large cohort of high-risk primary BC patients who underwent AHPCT in Italy. A total of 1183 patients receiving HDC for high-risk BC (HRBC) (>3 positive nodes) were identified in the Italian registry. The median age was 46 years, 62% of patients were premenopausal at treatment, 60.1% had endocrine-responsive tumors, and 20.7% had a human epidermal growth factor receptor 2 (HER2)-positive tumor. The median number of positive lymph nodes (LN) at surgery was 15, with 71.5% of patients having ≥ 10 positive nodes. Seventy-three percent received an alkylating agent-based HDC as a single procedure, whereas 27% received epirubicin or mitoxantrone-containing HDC, usually within a multitransplantation program. The source of stem cells was peripheral blood in the vast majority of patients. Transplantation-related mortality was .8%, whereas late cardiac and secondary tumor-related mortality were around 1%, overall. With a median follow-up of 79 months, median disease-free and overall survival (OS) in the entire population were 101 and 134 months, respectively. Subgroup analysis demonstrated that OS was significantly better in patients with endocrine-responsive tumors and in patients receiving multiple transplantation procedures. HER2 status did not affect survival probability. The size of the primary tumor and number of involved LN negatively affected OS. Adjuvant HDC with AHPCT has a low mortality rate and provides impressive long-term survival rates in patients with high-risk primary BC. Our results suggest that this treatment modality should be proposed in selected HRBC patients and further investigated in clinical trials. PMID:24374214

  17. Innovative Interventional and Imaging Registries: Precision Medicine in Cerebrovascular Disorders

    PubMed Central

    Liebeskind, David S.

    2015-01-01

    Background Precision medicine in cerebrovascular disorders may be greatly advanced by the use of innovative interventional and imaging-intensive registries. Registries have remained subsidiary to randomized controlled trials, yet vast opportunities exist to leverage big data in stroke. Summary This overview builds upon the rationale for innovative, imaging-intensive interventional registries as a pivotal step in realizing precision medicine for several cerebrovascular disorders. Such enhanced registries may serve as a model for expansion of our translational research pipeline to fully leverage the role of phase IV investigations. The scope and role of registries in precision medicine are considered, followed by a review on the history of stroke and interventional registries, data considerations, critiques or barriers to such initiatives, and the potential modernization of registry methods into efficient, searchable, imaging-intensive resources that simultaneously offer clinical, research and educational added value. Key Messages Recent advances in technology, informatics and endovascular stroke therapies converge to provide an exceptional opportunity for registries to catapult further progress. There is now a tremendous opportunity to deploy registries in acute stroke, intracranial atherosclerotic disease and carotid disease where other clinical trials leave questions unanswered. Unlike prior registries, imaging-intensive and modernized methods may leverage current technological capabilities around the world to efficiently address key objectives and provide added clinical, research and educational value. PMID:26600792

  18. An Update on the Florida State Twin Registry

    PubMed Central

    Taylor, Jeanette E.; Hart, Sara A.; Mikolajewski, Amy J.

    2012-01-01

    The Florida State Twin Registry began in 2002 through a pilot study of personality disorders and executive cognitive functioning in adult twins. Since 2006, the registry has grown substantially as part of the Learning Disability Research Center at Florida State University that recently began its second funding cycle through the National Institute of Child Health and Development. An update on the Florida State Twin Registry sample, focus, and measures is provided as well as future directions. PMID:23067863

  19. 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 ...

  20. Chapter 43: Registry Clients

    NASA Astrophysics Data System (ADS)

    Greene, G.; Plante, R.

    The registry is a central component for the development of astronomical tools and applications requiring search and discovery. It contains standard descriptions for a variety of astronomical resources and services, including methods for remote invocation. Using web service technology, programmatic interfaces to the registry offer a powerful and robust mechanism for extracting specific sets of services and also a framework for combining a variety of astronomical resources into complex applications, for example, Datascope, Open SkyQuery, and WESIX. While the legacy of the NVO does not extend far back into history, we present here the current state of interfaces that client applications and tools have been built on, yet also extend the concepts to the new standard Registry Interface which will provide a uniform client interface protocol throughout the IVOA registry network. We explore this technology and discuss several implementations that exist in the current VO framework using JAVA, C#, Python, and IDL.

  1. Trauma registry reengineered.

    PubMed

    Wargo, Christina; Bolig, Nicole; Hixson, Heather; McWilliams, Nate; Rummerfield, Heather; Stratton, Elaine; Woodruff, Tracy

    2014-01-01

    A successful trauma registry balances accuracy of abstraction and timeliness of case submissions to achieve quality performance. Staffing to achieve quality performance is a challenge at times based on competitive institutional need. The aim of this performance improvement timing study was to identify trauma registry job responsibilities and redesign the responsibilities to create increased abstraction time and maintain accuracy of data abstraction. The outcome is measured by case submission rates with existing staffing and interrater reliability outcomes. PMID:25397337

  2. A methodology for a minimum data set for rare diseases to support national centers of excellence for healthcare and research

    PubMed Central

    Choquet, Rémy; Maaroufi, Meriem; de Carrara, Albane; Messiaen, Claude; Luigi, Emmanuel; Landais, Paul

    2015-01-01

    Background Although rare disease patients make up approximately 6–8% of all patients in Europe, it is often difficult to find the necessary expertise for diagnosis and care and the patient numbers needed for rare disease research. The second French National Plan for Rare Diseases highlighted the necessity for better care coordination and epidemiology for rare diseases. A clinical data standard for normalization and exchange of rare disease patient data was proposed. The original methodology used to build the French national minimum data set (F-MDS-RD) common to the 131 expert rare disease centers is presented. Methods To encourage consensus at a national level for homogeneous data collection at the point of care for rare disease patients, we first identified four national expert groups. We reviewed the scientific literature for rare disease common data elements (CDEs) in order to build the first version of the F-MDS-RD. The French rare disease expert centers validated the data elements (DEs). The resulting F-MDS-RD was reviewed and approved by the National Plan Strategic Committee. It was then represented in an HL7 electronic format to maximize interoperability with electronic health records. Results The F-MDS-RD is composed of 58 DEs in six categories: patient, family history, encounter, condition, medication, and questionnaire. It is HL7 compatible and can use various ontologies for diagnosis or sign encoding. The F-MDS-RD was aligned with other CDE initiatives for rare diseases, thus facilitating potential interconnections between rare disease registries. Conclusions The French F-MDS-RD was defined through national consensus. It can foster better care coordination and facilitate determining rare disease patients’ eligibility for research studies, trials, or cohorts. Since other countries will need to develop their own standards for rare disease data collection, they might benefit from the methods presented here. PMID:25038198

  3. 77 FR 11116 - Draft National Plan To Address Alzheimer's Disease

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-02-24

    ... HUMAN SERVICES Draft National Plan To Address Alzheimer's Disease AGENCY: Office of the Assistant.... SUMMARY: HHS is soliciting public input on the draft National Plan to Address Alzheimer's Disease, which... Alzheimer's disease. Coordinate Alzheimer's disease research and services across all federal...

  4. High risk of peripheral arterial disease in the United Kingdom: 2-year results of a prospective registry.

    PubMed

    Stansby, Gerard; Mister, Rebecca; Fowkes, Gerry; Roughton, Michael; Nugara, Fiona; Brittenden, Julie; Bradbury, Andrew; Ashley, Simon; Shearman, Cliff; Hannon, Ray; Flather, Marcus

    2011-02-01

    We report a prospective 2-year, multicenter study of patients presenting with intermittent claudication (IC; ankle brachial blood pressure index, ABPI ≤ 0.9). Mean age of the 473 patients enrolled was 68 years, 20% were diabetics, 30% had prior symptomatic coronary heart disease (CHD), 7% had prior stroke, and 39% were current smokers. At baseline, 26.2% of patients had BP ≤ 140/85 mm Hg or lower and at 2 years this figure was 32.5% (P = .01). Current smokers had fallen to 27% (from 39%) at 2 years (P < .001). Use of antiplatelet agents, statins, and angiotensin converting enzyme inhibitors increased significantly during the course of the study as did claudication distance. Death and the composite of death, stroke or myocardial infarction (MI), occurred in 8.4% and 11.6% of patients, respectively. Prognosis was worse in patients with prior history of CHD, older age, those with diabetes and a lower ABPI. PMID:21220371

  5. Frequency of platelet type versus type 2B von Willebrand disease. An international registry-based study.

    PubMed

    Hamilton, Alexander; Ozelo, Margareth; Leggo, Jayne; Notley, Colleen; Brown, Hannah; Frontroth, Juan Pablo; Angelillo-Scherrer, Anne; Baghaei, Fariba; Enayat, Said M; Favaloro, Emmanuel; Lillicrap, David; Othman, Maha

    2011-03-01

    Less than 50 patients are reported with platelet type von Willebrand disease (PT-VWD) worldwide. Several reports have discussed the diagnostic challenge of this disease versus the closely similar disorder type 2B VWD. However, no systematic study has evaluated this dilemma globally. Over three years, a total of 110 samples/data from eight countries were analysed. A molecular approach was utilised, analysing exon 28 of the von Willebrand factor (VWF) gene, and in mutation negative cases the platelet GP1BA gene. Our results show that 48 cases initially diagnosed as putative type 2B/PT-VWD carried exon 28 mutations consistent with type 2B VWD, 17 carried GP1BA mutations consistent with a PT-VWD diagnosis, three had other VWD types (2A and 2M) and five expressed three non-previously published exon 28 mutations. Excluding 10 unaffected family members and one acquired VWD, 26 cases did not have mutations in either genes. Based on our study, the percentage of type 2B VWD diagnosis is 44% while the percentage of misdiagnosis of PT-VWD is 15%. This is the first large international study to investigate the occurrence of PT-VWD and type 2B VWD worldwide and to evaluate DNA analysis as a diagnostic tool for a large cohort of patients. The study highlights the diagnostic limitations due to unavailability/poor application of RIPA and related tests in some centres and proposes genetic analysis as a suitable tool for the discrimination of the two disorders worldwide. Cases that are negative for both VWF and GP1BA gene mutations require further evaluation for alternative diagnoses. PMID:21301777

  6. Design, set-up and utility of the UK facioscapulohumeral muscular dystrophy patient registry.

    PubMed

    Evangelista, Teresinha; Wood, Libby; Fernandez-Torron, Roberto; Williams, Maggie; Smith, Debbie; Lunt, Peter; Hudson, Judith; Norwood, Fiona; Orrell, Richard; Willis, Tracey; Hilton-Jones, David; Rafferty, Karen; Guglieri, Michela; Lochmüller, Hanns

    2016-07-01

    Facioscapulohumeral dystrophy (FSHD) is a rare inherited neuromuscular disease estimated to affect 1/15,000 people. Through basic research, remarkable progress has been made towards the development of targeted therapies. Patient identification, through registries or other means is essential for trial-readiness. The UK FSHD Patient Registry is a patient initiated registry that collects standardised and internationally agreed dataset of self-reported clinical details combined with professionally verified genetic information. It includes four additional questionnaires to capture patient reported outcomes related to pain, quality of life and scapular fixation. Between 2013 and 2015, 518 patients registered 243 males, 241 females with a mean age of 47.8 years. Most of the patients have FSHD type 1 (91.7 %), and weakness of the facial (59.2 %) was the most prevalent symptom at onset, followed by shoulder-girdle muscles (53.3 %) and distal (22.45 %) or proximal lower limb weakness (14.8 %). 85.57 % patients were ambulant or ambulant with assistance at the time of registration, 7.9 % report respiratory insufficiency. The registry has demonstrated utility with the recruitment of patients for a natural history study of infantile onset FSHD, and the longitudinal analysis of patient-related outcomes will provide much-needed baseline information to power future trials. The internationally agreed core dataset enables national registries to participate in a "Global FSHD registry". We suggest that the registry's ability to interoperate with other large datasets will be instrumental for sharing and exploiting data globally. PMID:27159994

  7. Stereotactic Body Radiotherapy for Clinically Localized Prostate Cancer: Toxicity and Biochemical Disease-Free Outcomes from a Multi-Institutional Patient Registry

    PubMed Central

    Sharma, Sanjeev; Shumway, Richard; Perry, David; Bydder, Sean; Simpson, C. Kelley; D'Ambrosio, David

    2015-01-01

    Objectives: To report on initial patient characteristics, treatment practices, toxicity, and early biochemical disease-free survival (bDFS) of localized prostate cancer treated with stereotactic body radiotherapy (SBRT) and enrolled in the RSSearch® Patient Registry. Methods: A retrospective analysis was conducted on patients with clinically localized prostate cancer enrolled in RSSearch® from June 2006 - January 2015. Patients were classified as low-risk (PSA ≤ 10 ng/ml, T1c-T2a, Gleason score ≤ 6), intermediate-risk (PSA 10.1 - 20 ng/ml, T2b-T2c, or Gleason 7), or high-risk (PSA > 20 ng/ml, T3 or Gleason ≥ 8). Toxicity was reported using Common Toxicity Criteria for Adverse Events, version 3. Biochemical failure was assessed using the Phoenix definition (nadir + 2 ng/ml). The Kaplan-Meier analysis was used to calculate bDFS and association of patient and tumor characteristics with the use of SBRT. Results: Four hundred thirty-seven patients (189 low, 215 intermediate, and 33 high-risk) at a median of 69 years (range: 48-88) received SBRT at 17 centers. Seventy-eight percent of patients received 36.25 Gy/5 fractions, 13% received 37 Gy/5 fractions, 6% received 35 Gy/5 fractions, 3% received 38 Gy/4 fractions, and 5% received a boost dose of 19.5-29 Gy following external beam radiation therapy. Median follow-up was 20 months (range: 1–64 months). Genitourinary (GU) and gastrointestinal (GI) toxicities were minimal, with no acute or late Grade 3+ GU or GI toxicity. Late Grade 1 and 2 urinary frequency was 25% and 8%. Late Grade 1 and 2 proctitis was 3% and 2%. Median PSA decreased from 5.8 ng/ml (range: 0.3-43) to 0.88, 0.4, and 0.3 ng/ml at one, two, and three years. Two-year bDFS for all patients was 96.1%. Two-year bDFS was 99.0%, 94.5%, and 89.8% for low, intermediate, and high-risk patients (p < 0.0001). Two-year bDFS was 99.2%, 93.2%, and 90.4% for Gleason ≤ 6, Gleason 7, and Gleason ≥ 8 (p < 0.0001). Two-year bDFS was 96.4%, 97

  8. [Influence of registries on the quality of care].

    PubMed

    Stengel, D; Dreinhöfer, K; Kostuj, T

    2016-06-01

    Registries are a topic of lively debate amongst all stakeholders in healthcare, politics and economics. In general, registries are national or international (prospective) databases documenting the current state of diagnostic, therapeutic and long-term outcome variables of subjects with a distinct condition or health problem. The access to and handling of registry information is subject to strict legal, methodological and ethical principles and regulations before these data can be scientifically utilized and reentered into the routine daily practice. Because of the representativeness and reality of data, registries are widely regarded as the backbone of health systems and budgets.Currently there is only indirect evidence that registries influence outcomes and the quality of care. Recent statistical techniques may allow quasi-experimental modelling of observational information. In orthopedic and trauma surgery, current and upcoming registries should be wisely utilized to develop and evaluate innovations and to make informed decisions relevant to care. PMID:27164976

  9. Body mass index and survival after diagnosis of invasive breast cancer: a study based on the Japanese National Clinical Database-Breast Cancer Registry.

    PubMed

    Kawai, Masaaki; Tomotaki, Ai; Miyata, Hiroaki; Iwamoto, Takayuki; Niikura, Naoki; Anan, Keisei; Hayashi, Naoki; Aogi, Kenjiro; Ishida, Takanori; Masuoka, Hideji; Iijima, Kotaro; Masuda, Shinobu; Tsugawa, Koichiro; Kinoshita, Takayuki; Nakamura, Seigo; Tokuda, Yutaka

    2016-06-01

    Few studies have reported the association between body mass index (BMI) and outcome among Asian breast cancer patients. We analyzed data for 20,090 female invasive breast cancer patients who had been followed-up for a median period of 6.7 years entered in the National Clinical Database-Breast Cancer Registry between 2004 and 2006. We used mainly the WHO criteria for BMI (kg/m(2) ) categories; <18.5 (underweight), ≥18.5-<21.8 (reference), ≥21.8-<25, ≥25-<30 (overweight), and ≥30 (obese). We divided normal weight patients into two subgroups because this category includes many patients compared to others. The timing of BMI measurement was not specified. The Cox proportional hazards model and cubic spline regression were used to estimate hazard ratios (HRs) and 95% confidence intervals (CIs). Smoking, alcohol, and physical activity were not controlled. A total of 1418 all-cause, 937 breast cancer-specific deaths, and 2433 recurrences were observed. Obesity was associated with an increased risk of all-cause (HR: 1.46; 95% CI: 1.16-1.83) and breast cancer-specific death (HR: 1.47; 95% CI: 1.11-1.93) for all patients, and with all-cause (HR: 1.47; 95% CI: 1.13-1.92) and breast cancer-specific death (HR: 1.58; 95% CI: 1.13-2.20) for postmenopausal patients. Being underweight was associated with an increased risk of all-cause death for all (HR: 1.41; 95% CI: 1.16-1.71) and for postmenopausal patients (HR: 1.45; 95% CI: 1.15-1.84). With regard to subtype and menopausal status, obesity was associated with an increased risk of breast cancer-specific death for all cases of luminal B tumor (HR: 2.59; 95% CI: 1.51-4.43; Pheterogeneity of Luminal B vs. Triple negative = 0.016) and for postmenopausal patients with luminal B tumor (HR: 3.24; 95% CI: 1.71-6.17). Being obese or underweight is associated with a higher risk of death among female breast cancer patients in Japan. PMID:26923549

  10. Regional administrative health registries as a resource in clinical epidemiologyA study of options, strengths, limitations and data quality provided with examples of use.

    PubMed

    Sørensen, H T

    1997-01-01

    The present thesis, which is based on a review and 12 published articles, concerns clinical epidemiological methods [176-187].The Nordic countries have for many years established numerous registries. The establishment in Denmark of the National Population Registry in 1924 and the personal registration number (the CPR number) in 1968 allowed person-identification of remarkable quality, and made it possible to gather information on the same person in several registries. This situation is unique to the Nordic countries.The administrative registries were not primarily established for research purposes but have often proved a valuable tool in research. Despite the extensive use of registries in research, the methodological literature on this subject is limited. The purpose of the present thesis was: 1) to analyse strengths and limitations in using regional administrative registries in research, 2) to develop a framework for evaluation of existing registries for use in clinical epidemiological research, 3) to develop methods for evaluation of the data quality in regional registries, and 4) to evaluate four regional Danish administrative health registries for use in clinical epidemiological research.The analyses of strengths, limitations and data quality were based on studies of data from the regional hospital information systems, health service registries, and public health officers' surveillance system for strong analgesics and notifiable diseases.Against the background of the studies, the many advantages of using registries in research are discussed. The most important advantage is that data already exist and time consumption is thus considerably reduced, compared with studies based on collection of primary data. Costs are also considerably reduced. Other advantages included the generally large sample sizes, which provide great precision in estimates and which allow the study of rare exposures, diseases and other effects. Typically, the registries are complete as far

  11. Impact of familial risk and mammography screening on prognostic indicators of breast disease among women from the Ontario site of the Breast Cancer Family Registry.

    PubMed

    Walker, Meghan J; Mirea, Lucia; Cooper, Kristine; Nabavi, Mitra; Glendon, Gord; Andrulis, Irene L; Knight, Julia A; O'Malley, Frances P; Chiarelli, Anna M

    2014-06-01

    Although several studies have found screen-detected cancers in women with familial breast cancer risk have favorable prognostic features compared with symptomatic cancers, the impact of level of familial risk is unknown. A cohort of 899 first-degree female relatives of cases of breast cancer from the Ontario site of the Breast Cancer Family Registry was followed for 2 years. Logistic regression analyses compared diagnoses of breast cancer or benign breast disease (BBD) between women at high (n = 258, 28.7 %) versus low/moderate (n = 641, 71.3 %) familial risk. Similar analyses compared prognostic features of invasive cancers and BBD by level of familial risk and mammography screening status. Among 899 women, 44 (4.9 %) were diagnosed with invasive breast cancer and/or ductal carcinoma in situ, and 56 (6.2 %) with BBD. Women with high familial risk were significantly more likely to be diagnosed with breast cancer [odds ratio (OR) = 2.84, 95 % confidence interval (CI) 1.50-5.38] than low/moderate risk women, particularly if diagnosed at age ≥50 (OR = 2.99, 95 % CI 1.37-6.56) or screened with mammography (OR = 3.33, 95 % CI 1.54-7.18). High risk women were more likely to be diagnosed with BBD (OR = 1.94, 95 % CI 1.03-3.66). Level of familial risk was not associated with prognostic features. Cancers among unscreened women were larger (OR = 9.72, 95 % CI 1.01-93.61) and diagnosed at stage II or above (OR = 7.80, 95 % CI 1.18-51.50) compared with screen-detected cancers. Screening mammography may be effective for women with a first-degree family history of breast cancer, irrespective of level of familial risk. PMID:24097051

  12. Men with testosterone deficiency and a history of cardiovascular diseases benefit from long-term testosterone therapy: observational, real-life data from a registry study

    PubMed Central

    Haider, Ahmad; Yassin, Aksam; Haider, Karim Sultan; Doros, Gheorghe; Saad, Farid; Rosano, Giuseppe MC

    2016-01-01

    Background/objectives Long-term testosterone therapy (TTh) in men with hypogonadism has been shown to improve all components of the metabolic syndrome. In this study, we investigated the effects of long-term TTh up to 8 years in hypogonadal men with a history of cardiovascular disease (CVD). Patients and methods In two urological clinics observational registries, we identified 77 hypogonadal men receiving TTh who also had a history of CVD. The effects of TTh on anthropometric and metabolic parameters were investigated for a maximum duration of 8 years. Any occurrence of major adverse cardiovascular events was reported. All men received long-acting injections of testosterone undecanoate at 3-monthly intervals. Results In 77 hypogonadal men with a history of CVD who received TTh, we observed a significant weight loss and a decrease in waist circumference and body mass index. Mean weight decreased from 114±13 kg to 91±9 kg, change from baseline: −24±1 kg and −20.2%±0.5%. Waist circumference decreased from 112±8 cm to 99±6 cm, change from baseline: −13±0.3 cm. Body mass index decreased from 37±4 to 29±3, change from baseline: −8±0.2 kg/m2. Cardio-metabolic parameters such as lipid pattern, glycemic control, blood pressure, heart rate, and pulse pressure all improved significantly and sustainably. No patient suffered a major adverse cardiovascular event during the full observation time. Conclusion In men with hypogonadism, TTh appears to be effective in achieving sustained improvements in all cardiometabolic risk factors and may be effective as an add-on measure in the secondary prevention of cardiovascular events in hypogonadal men with a history of CVD. PMID:27366080

  13. Chronic granulomatous disease: a 25-year patient registry based on a multistep diagnostic procedure, from the referral center for primary immunodeficiencies in Greece.

    PubMed

    Raptaki, Maria; Varela, Ioanna; Spanou, Kleopatra; Tzanoudaki, Marianna; Tantou, Sofia; Liatsis, Manolis; Constantinidou, Nikki; Bakoula, Chryssa; Roos, Dirk; Kanariou, Maria

    2013-11-01

    Chronic Granulomatous Disease (CGD) is an uncommon primary immunodeficiency caused by the absence or dysfunction of one of NADPH oxidase subunits, with heterogeneous genetic aetiologies. The aim of this study was the CGD patient registry in Greece, the identification of the responsible genotype and the potential correlation with the patient's clinical phenotype. Medical charts of 24 CGD patients, investigated by NBT test or DHR for NADPH oxidase activity, Western blot analysis for NADPH oxidase component expression and DNA sequencing (pyro- and cycle sequencing) for mutation analysis, were reviewed. All patients, but one, were classified into the different types of CGD. Sixteen patients from 14 unrelated families had X-linked CGD (66.7 %), four had mutations in the NCF1 gene (19 %), and three, from two unrelated families, had mutations in NCF2 (9.5 %) [Corrected]. Fifteen mutations were detected in the CYBB gene, including nonsense (53.8 %), splice site (30.8 %) and missense mutations (7.7 %), and deletions (7.7 %). Two novel mutations were identified; one in CYBB and one in NCF1. Carrier detection for X-CGD revealed that the de novo mutation rate was about 7 %. Prenatal diagnosis identified one affected male in three male fetuses tested. In both the X-linked and the autosomal recessive (AR-CGD) group, the gastrointestinal and respiratory manifestations were more common, followed by lympadenopathy in X-CGD and skin infections in the AR-CGD group. The patients with a mutation in CYBB had a wider variability of clinical manifestations and earlier diagnosis (4.6 years) compared to the AR-CGD group (12.9 years). The incidence of CGD in Greece is estimated at 0.90 (95 % CI 0.89-0.91) per 100,000 live births for the last decade. PMID:24081483

  14. US Beryllium Case Registry through 1977

    SciTech Connect

    Sprince, N.L.; Kazemi, H.

    1980-02-01

    A synopsis of the cases reported to the Beryllium Case Registry between 1973 and 1977 is presented. As of 1973, there were 832 cases of beryllium disease entered into the Registry. In the five years since that report, 55 additional cases have been added, 40 men and 15 women. Exposures occured in the electronics and nuclear industries in the production and use of beryllium containing alloys and beryllium oxide ceramis. Pathological changes in the lung tissue are described. Cases continue to be reported in which the diagnosis was sarcoidosis until the history of beryllium exposure led to the finding of beryllium in the lung tissue or mediastinal lymph node biopsy. Data from the Registry support the fact that chronic beryllium disease is a continued occupational hazard.

  15. Malignancies in Swedish persons with haemophilia: a longitudinal registry study.

    PubMed

    Lövdahl, Susanna; Henriksson, Karin M; Baghaei, Fariba; Holmström, Margareta; Berntorp, Erik; Astermark, Jan

    2016-09-01

    The aim of the study was to investigate, over time, the incidence of and mortality due to malignant diseases among persons with haemophilia, compared to matched controls. Persons with haemophilia A or B were enrolled via registries at each haemophilia centre, as well as from the National Patient Registry, and were compared to five sex and age-matched controls per patient. Data from the national Cancer Registry were linked to the study participants. A total of 1431 persons with haemophilia and 7150 matched controls were enrolled. Between the years 1972 and 2008, 164 malignancies were reported. The most common type of cancer among patients was prostate cancer, followed by haematologic malignancies, including lymphoma and leukaemia, which were significantly more frequent in patients [n = 35 (2.4%) vs. n = 60 (0.8%); P < 0.001]. Malignancies in bladder and other urinary organs were also significantly different [n = 21 (1.5%) vs. n = 46 (0.6%); P < 0.01]. The overall incidence rate ratio of malignancies per 1000 person-years compared to the controls was 1.3 [95% confidence interval (CI) 1.1, 1.6]. In subgroup analysis, the corresponding incidence rate ratios per 1000 person-years for persons with severe haemophilia was 1.7 (95% CI 0.9, 3.1) and that for mild/moderate haemophilia 1.1 (95% CI 0.8, 1.5). Swedish persons with haemophilia had a significantly higher incidence of malignant diseases than controls. These were primarily haematologic malignancies and cancer in urinary organs, and the difference independent of any co-infections with HIV and/or viral hepatitis. The findings indicate the importance of further studies and close follow-up of malignancies in persons with haemophilia. PMID:26974329

  16. National Enteric Disease Surveillance: Botulism Annual Summary, 2012

    MedlinePlus

    National Enteric Disease Surveillance: Botulism Annual Summary, 2012 An overview of national botulism surveillance is available at: http: / / www. cdc. gov/ ncezid/ dfwed/ PDFs/ bot- overview_ 508c. pdf Summary of Botulism ...

  17. [Considerations on limits and profits of registries].

    PubMed

    Addis, Antonio; Costa, Enrico; De Palma, Rossana; Magrini, Nicola; Marata, Anna Maria; Martelli, Luisa; Papini, Donato; Traversa, Giuseppe

    2015-09-01

    The article collects the summary of the discussion occurred in the setting of PRIER II, in the session dedicated to the taxonomy of registries. Shown below, some specific contributions by health professionals working at the regional departments, which deal with registries, as well as the contribution on the same subject by specialists working at some pharmaceutical companies. In particular, after the presentation summarized in the article by prof. Giuseppe Costa1, the contributions, respectively by a representative of the Emilia-Romagna Region, of a health and hospital service and by the PRIER II workgroup, are following. Finally, a collective work with all participants to the working group took place to focus on all the issues considered to be crucial in defining clinical registries. At the same discussion table, institutional representatives of the regulatory national and regional branch were also invited to take into consideration the points of view of all public and private registry users, in particular in their benefits, limits and purposes. Going through the discussion on a specific check list and deepening a number of statements identified by the working group, a list of key points, essential to characterize each clinical registry, was produced. PMID:26418504

  18. Videos from the National Eye Institute: Eye Diseases

    MedlinePlus

    ... this page please turn Javascript on. Feature: Vision Videos from the National Eye Institute: Eye Diseases Past ... the early detection of eye disease. Share these videos with friends, family and colleagues. www.nei.nih. ...

  19. Linkage between the Danish National Health Service Prescription Database, the Danish Fetal Medicine Database, and other Danish registries as a tool for the study of drug safety in pregnancy

    PubMed Central

    Pedersen, Lars H; Petersen, Olav B; Nørgaard, Mette; Ekelund, Charlotte; Pedersen, Lars; Tabor, Ann; Sørensen, Henrik T

    2016-01-01

    A linked population-based database is being created in Denmark for research on drug safety during pregnancy. It combines information from the Danish National Health Service Prescription Database (with information on all prescriptions reimbursed in Denmark since 2004), the Danish Fetal Medicine Database, the Danish National Registry of Patients, and the Medical Birth Registry. The new linked database will provide validated information on malformations diagnosed both prenatally and postnatally. The cohort from 2008 to 2014 will comprise 589,000 pregnancies with information on 424,000 pregnancies resulting in live-born children, ∼420,000 pregnancies undergoing prenatal ultrasound scans, 65,000 miscarriages, and 92,000 terminations. It will be updated yearly with information on ∼80,000 pregnancies. The cohort will enable identification of drug exposures associated with severe malformations, not only based on malformations diagnosed after birth but also including those having led to termination of pregnancy or miscarriage. Such combined data will provide a unique source of information for research on the safety of medications used during pregnancy. PMID:27274312

  20. Idiopathic pulmonary fibrosis in Sweden: report from the first year of activity of the Swedish IPF-Registry

    PubMed Central

    Ferrara, Giovanni; Carlson, Lisa; Palm, Andreas; Einarsson, Jonas; Olivesten, Cecilia; Sköld, Magnus; for the Swedish Idiopathic Pulmonary Fibrosis Registry Group

    2016-01-01

    Background Idiopathic pulmonary fibrosis (IPF) is an emerging problem in the western world, being related to increasing age and implying significant costs for the diagnosis and management of affected patients. The epidemiology of IPF is not well understood. Methods To allow estimates of the problem and eventually to evaluate quality of the care of IPF patients in Sweden, a national IPF Registry was started in the autumn of 2014. Data on criteria used to diagnose IPF, demographics, lung function, and quality of life (measured with the King's Brief Interstitial Lung Disease Questionnaire, K-BILD) were reported directly to the registry, based at the coordinating centre (Karolinska University Hospital, Stockholm, Sweden) via a web-based platform. Results During the first year, the registry was implemented in 11 (33%) of the 33 respiratory units in the country. Seventy-one patients were registered between October 2014 and October 2015, 50 (70.4%) males and 21 (29.6%) females. Median age was 70 (range 47–86). The mean K-BILD score at the first inclusion in the registry was 54.3+9.5. Conclusions The main features of IPF patients in this first Swedish cohort were consistent with data published in the literature in main multinational randomized controlled trials. The K-BILD questionnaire showed that quality of life of patients with IPF and their perception of the disease are quite poor at the time of inclusion in the registry. PMID:27105945

  1. Valve Sparing Aortic Root Replacement in Patients with Marfan Syndrome Enrolled in the National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions

    PubMed Central

    Song, Howard K.; Preiss, Liliana R.; Maslen, Cheryl L.; Kroner, Barbara; Devereux, Richard B.; Roman, Mary J.; Holmes, Kathryn W.; Tolunay, H. Eser; Desvigne-Nickens, Patrice; Asch, Federico M.; Milewski, Rita K.; Bavaria, Joseph; LeMaire, Scott A.

    2016-01-01

    Background The long-term outcomes of aortic valve sparing (AVS) root replacement in Marfan syndrome (MFS) patients remain uncertain. We sought to determine the utilization and outcomes of AVS root replacement in MFS patients enrolled in the Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions (GenTAC). Methods At the time of this analysis, 788 patients with MFS were enrolled in the GenTAC Registry, of whom 288 have undergone aortic root replacement. Patients who have undergone AVS procedures were compared to those who have undergone aortic valve replacing (AVR) procedures. Results AVS root replacement was performed in 43.5% of MFS patients and the frequency of AVS increased over the past 5 years. AVS patients were younger at the time of surgery (31.0 vs. 36.3 years, p=0.006) and more likely to have had elective rather than emergency surgery compared to AVR patients. AVR patients were more likely to have had aortic valve dysfunction and aortic dissection as a primary indication for surgery. After mean follow-up of 6.2 (SD=3.6) years, none of the 87 AVS patients have required reoperation; in contrast, after mean follow up of 10.5 (SD=7.6) years, 11.5% of AVR patients have required aortic root reoperation. Aortic valve function has been durable with 95.8% of AVS patients with aortic insufficiency graded as mild or less. Conclusions AVS root replacement is performed commonly in the MFS population. The durability of the aortic repair and aortic valve function have been excellent to date. These results justify the continued use of the procedure in the elective setting. The GenTAC Registry will be a useful resource to assess the long-term durability of AVS root replacement in the future. PMID:25296451

  2. Multicenter Breast Cancer Collaborative Registry

    PubMed Central

    Sherman, Simon; Shats, Oleg; Fleissner, Elizabeth; Bascom, George; Yiee, Kevin; Copur, Mehmet; Crow, Kate; Rooney, James; Mateen, Zubeena; Ketcham, Marsha A.; Feng, Jianmin; Sherman, Alexander; Gleason, Michael; Kinarsky, Leo; Silva-Lopez, Edibaldo; Edney, James; Reed, Elizabeth; Berger, Ann; Cowan, Kenneth

    2011-01-01

    The Breast Cancer Collaborative Registry (BCCR) is a multicenter web-based system that efficiently collects and manages a variety of data on breast cancer (BC) patients and BC survivors. This registry is designed as a multi-tier web application that utilizes Java Servlet/JSP technology and has an Oracle 11g database as a back-end. The BCCR questionnaire has accommodated standards accepted in breast cancer research and healthcare. By harmonizing the controlled vocabulary with the NCI Thesaurus (NCIt) or Systematized Nomenclature of Medicine-Clinical Terms (SNOMED-CT), the BCCR provides a standardized approach to data collection and reporting. The BCCR has been recently certified by the National Cancer Institute’s Center for Biomedical Informatics and Information Technology (NCI CBIIT) as a cancer Biomedical Informatics Grid (caBIG®) Bronze Compatible product. The BCCR is aimed at facilitating rapid and uniform collection of critical information and biological samples to be used in developing diagnostic, prevention, treatment, and survivorship strategies against breast cancer. Currently, seven cancer institutions are participating in the BCCR that contains data on almost 900 subjects (BC patients and survivors, as well as individuals at high risk of getting BC). PMID:21918596

  3. Multicenter breast cancer collaborative registry.

    PubMed

    Sherman, Simon; Shats, Oleg; Fleissner, Elizabeth; Bascom, George; Yiee, Kevin; Copur, Mehmet; Crow, Kate; Rooney, James; Mateen, Zubeena; Ketcham, Marsha A; Feng, Jianmin; Sherman, Alexander; Gleason, Michael; Kinarsky, Leo; Silva-Lopez, Edibaldo; Edney, James; Reed, Elizabeth; Berger, Ann; Cowan, Kenneth

    2011-01-01

    The Breast Cancer Collaborative Registry (BCCR) is a multicenter web-based system that efficiently collects and manages a variety of data on breast cancer (BC) patients and BC survivors. This registry is designed as a multi-tier web application that utilizes Java Servlet/JSP technology and has an Oracle 11g database as a back-end. The BCCR questionnaire has accommodated standards accepted in breast cancer research and healthcare. By harmonizing the controlled vocabulary with the NCI Thesaurus (NCIt) or Systematized Nomenclature of Medicine-Clinical Terms (SNOMED-CT), the BCCR provides a standardized approach to data collection and reporting. The BCCR has been recently certified by the National Cancer Institute's Center for Biomedical Informatics and Information Technology (NCI CBIIT) as a cancer Biomedical Informatics Grid (caBIG(®)) Bronze Compatible product.The BCCR is aimed at facilitating rapid and uniform collection of critical information and biological samples to be used in developing diagnostic, prevention, treatment, and survivorship strategies against breast cancer. Currently, seven cancer institutions are participating in the BCCR that contains data on almost 900 subjects (BC patients and survivors, as well as individuals at high risk of getting BC). PMID:21918596

  4. 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

  5. National Institutes of Health Osteoporosis and Related Bone Diseases~National Resource Center

    MedlinePlus

    ... Publications View Publications View Publications View Publications Research Resources Clinical Trials www.clinicaltrials.gov MedlinePlus www.nlm. ... The NIH Osteoporosis and Related Bone Diseases ~ National Resource Center is supported by the National Institute of ...

  6. Low Birth Weight and Risk of Progression to End Stage Renal Disease in IgA Nephropathy—A Retrospective Registry-Based Cohort Study

    PubMed Central

    Svarstad, Einar; Leh, Sabine; Marti, Hans-Peter; Reisæther, Anna Varberg

    2016-01-01

    Background Low Birth Weight (LBW) is a surrogate for fetal undernutrition and is associated with impaired nephron development in utero. In this study, we investigate whether having been born LBW and/or small for gestational age (SGA) predict progression to ESRD in IgA nephropathy (IgAN) patients. Study Design Retrospective registry-based cohort study. Settings & Participants The Medical Birth Registry has recorded all births since 1967 and the Norwegian Renal Registry has recorded all patients with ESRD since 1980. Based on data from the Norwegian Kidney Biopsy Registry we included all patients diagnosed with IgAN in Norway from 1988–2013. These registries were linked and we analysed risk of progression to ESRD associated with LBW (defined as birth weight less than the 10th percentile) and/or SGA (defined as birth weight less than the 10th percentile for gestational week) by Cox regression statistics. Results We included 471 patients, of whom 74 developed ESRD. As compared to patients without LBW, patients with LBW had a hazard ratio (HR) of 2.0 (95% confidence interval 1.1–3.7) for the total cohort, 2.2 (1.1–4.4) for males and 1.3 (0.30–5.8) for females. Corresponding HRs for SGA were 2.2 (1.1–4.2), 2.7 (1.4–5.5) and 0.8 (0.10–5.9). Further analyses showed that as compared to patients with neither LBW nor SGA, patients with either SGA or LBW did not have significantly increased risks (HRs of 1.3–1.4) but patients who were both LBW and SGA had an increased risk (HR 3.2 (1.5–6.8). Limitation Mean duration of follow-up only 10 years and maximum age only 46 years. Conclusion Among IgAN patients, LBW and/or SGA was associated with increased risk for progression to ESRD, the association was stronger in males. PMID:27092556

  7. United States Transuranium and Uranium Registries. Annual report

    SciTech Connect

    Kathren, R.

    1993-02-28

    The United States Transuranium and Uranium Registries are unique human tissue research programs studying the distribution, dose, and possible biological effects of the actinide elements in man, with the primary goal of assuring the adequacy of radiation protection standards for these radionuclides. The Registries research is based on radiochemical analysis of tissues collected at autopsy from voluntary donors who have documented occupational exposure to the actinides. To date, tissues, or in some cases radioanalytical results only, have been obtained from approximately 300 individuals; another 464 living individuals have volunteered to participate in the Registries research programs and have signed premortem informed consent and autopsy permissions. The Registries originated at the National Plutonium Registry which was started in 1968 as a then Atomic Energy Commission project under the aegis of a prime contractor at the Hanford site. In 1970, the name was changed to the United States Transuranium Registry to reflect a broader involvement with the higher actinides. In 1978, an administratively separate parallel registry, the United States Uranium Registry, was formed to carry out similar studies among uranium fuel cycle workers.

  8. [SPORTS-RELATED SUDDEN DEATH: LESSONS FROM THE FRENCH REGISTRY].

    PubMed

    Marijon, Eloi; Bougouin, Wulfran; Jouven, Xavier

    2015-09-01

    So far, sports-related sudden death has been mainly studied through young competitive athletes. The national sports-related sudden death French registry (2005-2010) is the first study evaluating sudden death during sports activities in the general population, estimating that approximately 1000 cases occur each year in France. The vast majority occurs among middle age men practicing recreational activities, with women presenting a very low risk (up to 30-fold lower) compared to men. Outcomes dramatically vary across districts with survival to hospital discharge from 0 to 50%. Those differences are mainly the result of major disparities between districts regarding cardiopulmonary resuscitation initiated by bystanders. Coronary artery disease remains the most frequent cardiovascular disease associated with such events. PMID:26619725

  9. Establishing a population-based patient-reported outcomes study (PROMs) using national cancer registries across two jurisdictions: the Prostate Cancer Treatment, your experience (PiCTure) study

    PubMed Central

    Drummond, F J; Kinnear, H; Donnelly, C; O'Leary, E; O'Brien, K; Burns, R M; Gavin, A; Sharp, L

    2015-01-01

    Objective To establish an international patient-reported outcomes (PROMs) study among prostate cancer survivors, up to 18 years postdiagnosis, in two countries with different healthcare systems and ethical frameworks. Design A cross-sectional, postal survey of prostate cancer survivors sampled and recruited via two population-based cancer registries. Healthcare professionals (HCPs) evaluated patients for eligibility to participate. Questionnaires contained validated instruments to assess health-related quality of life and psychological well-being, including QLQ-C30, QLQ-PR25, EQ-5D-5L, 21-question Depression, Anxiety and Stress Scale (DASS-21) and the Decisional Regret Scale. Setting Republic of Ireland (RoI) and Northern Ireland (NI). Primary outcome measures Registration completeness, predictors of eligibility and response, data missingness, unweighted and weighted PROMs. Results Prostate cancer registration was 80% (95% CI 75% to 84%) and 91% (95% CI 89% to 93%) complete 2 years postdiagnosis in NI and RoI, respectively. Of 12 322 survivors sampled from registries, 53% (n=6559) were classified as eligible following HCP screening. In the multivariate analysis, significant predictors of eligibility were: being ≤59 years of age at diagnosis (p<0.001), short-term survivor (<5 years postdiagnosis; p<0.001) and from RoI (p<0.001). 3348 completed the questionnaire, yielding a 54% adjusted response rate. 13% of men or their families called the study freephone with queries for assistance with questionnaire completion or to talk about their experience. Significant predictors of response in multivariate analysis were: being ≤59 years at diagnosis (p<0.001) and from RoI (p=0.016). Mean number of missing questions in validated instruments ranged from 0.12 (SD 0.71; EQ-5D-5L) to 3.72 (SD 6.30; QLQ-PR25). Weighted and unweighted mean EQ-5D-5L, QLQ-C30 and QLQ-PR25 scores were similar, as were the weighted and unweighted prevalences of depression, anxiety and

  10. 77 FR 10541 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-02-22

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis... Diseases Research, National Institutes of Health, HHS) Dated: February 14, 2012. Jennifer S....

  11. 78 FR 26644 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-05-07

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis...: National Institute of Allergy and Infectious Diseases Special Emphasis Panel; Clinical Trials Units...

  12. 78 FR 9404 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-02-08

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis...; 93.856, Microbiology and Infectious Diseases Research, National Institutes of Health, HHS)...

  13. 75 FR 76475 - National Institute of Allergy and Infectious Diseases; Notice of Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-12-08

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases.... App.), notice is hereby given of meetings of the National Advisory Allergy and Infectious Diseases... personal privacy. Name of Committee: National Advisory Allergy and Infectious Diseases Council....

  14. 76 FR 11799 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-03-03

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis...: National Institute of Allergy and Infectious Diseases Special Emphasis Panel; Host-Pathogen...

  15. 78 FR 3009 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-01-15

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis...: National Institute of Allergy and Infectious Diseases Special Emphasis Panel; NIAID Investigator...

  16. 77 FR 2736 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-01-19

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis... Transplantation Research; 93.856, Microbiology and Infectious Diseases Research, National Institutes of...

  17. Austrian National CathLab Registry (ANCALAR): cardiac catheterization, coronary angiography (CA), and percutaneous coronary intervention (PCI) in Austria during the year 2011 (Registry Data with Audit including 2012).

    PubMed

    Mühlberger, Volker; Kobel, Conrad; Kaltenbach, Lalit; Pachinger, Otmar

    2013-12-01

    Concerning international comparison for the year 2011, Austria is situated under the top nations with 6,383 diagnostic coronary angiographies (CA), 2,407 percutaneous coronary interventions (PCI), and 47 transarterial aortic valve implantations (TAVI) per 1 million inhabitants in Europe. Although the number of TAVI increases rapidly since its first introduction in 2007 (47 TAVI per 1 million inhabitants in 2011, not including surgical cases from the transapical route), the data for CA and PCI remained constant during the past years.The rates of stent (91%) and drug-eluting stent implantations (78% of stents) also remained constant on a high level. Little fluctuation is also reflected in the complication data (including mortality evaluation). An increased morality is well known, especially in patients with the so-called ST-segment elevation myocardial infarction and consecutive shock (19-35% in the past years).The application of certain special devices increased (clot catcher) or decreased (glycoprotein IIb/IIIa receptor antagonist) in 2011 or were finally unused (Laser).Interestingly, not only in Austria, it was observed several times that scientific knowledge, recommended as Class I Indications in the guidelines, takes several years to establish itself nationwide.Our independent, purely academic activity is located in the area of health services research, and has also the option to generate benchmarks for individual centers. Participation in our surveys is voluntary. Since 1992, every year, without interruption (no missing center!), 90-100 parameters are applicable. The questionnaire will be optimized and adapted to current conditions. This is done in cooperation with the participating centers. To provide comparability, we make only minimal and absolutely most necessary modifications.The data are collected and summarized at the end of the year by each center itself. During the year, the centers are visited to perform audits and to keep personal contact to them

  18. Towards better implementation of cancer screening in Europe through improved monitoring and evaluation and greater engagement of cancer registries.

    PubMed

    Anttila, Ahti; Lönnberg, Stefan; Ponti, Antonio; Suonio, Eero; Villain, Patricia; Coebergh, Jan Willem; von Karsa, Lawrence

    2015-01-01

    Proposals to improve implementation, monitoring and evaluation of breast, cervical and colorectal cancer screening programmes have been developed in a European project involving scientists and professionals experienced in cancer registration (EUROCOURSE). They call for a clear and more active role for cancer registries through better interfaces with cancer screening programmes and adapting data contents of cancer registries for evaluation purposes. Cancer registries are recognised as essential for adequate evaluation of cancer screening programmes, but they are not involved in screening evaluation in several European countries. This is a key barrier to improving the effectiveness of programmes across Europe. The variation in Europe in the implementation of cancer screening offers a unique opportunity to learn from best practices in collaboration between cancer registries and screening programmes. Population-based cancer registries have experience and tools in collecting and analysing relevant data, e.g. for diagnostic and therapeutic determinants of mortality. In order to accelerate improvements in cancer control we argue that cancer registries should take co-responsibility in promoting effective screening evaluation in Europe. Additional investments are vital to further development of infrastructures and activities for screening evaluation and monitoring in the national settings and also at the pan-European level. The EUROCOURSE project also aimed to harmonise implementation of the European quality assurance guidelines for cancer screening programmes across Europe through standardising routine data collection and analysis, and definitions for key performance indicators for screening registers. Data linkage between cancer and screening registers and other repositories of demographic data and cause of death and where available clinical registers is key to implementing the European screening standards and thereby reducing the burden of disease through early detection

  19. Young, male, road traffic victims: a systematic review of the published trauma registry literature from low and middle income countries

    PubMed Central

    Boughton, Oliver; Jones, Gareth G.; Lavy, Christopher B.D.; Grimes, Caris E.

    2015-01-01

    Background: Trauma contributes significantly to the global burden of disease. We analysed published trauma registries to assess the demographics of those most affected in low and middle-income countries (LMICs). Methods: We performed a systematic review of published trauma registry studies according to PRISMA guidelines. We included published full-text articles from trauma registries in low and middle-income countries describing the demographics of trauma registry patients. Articles from military trauma registries, articles using data not principally derived from trauma registry data, articles describing patients of only one demographic (e.g. only paediatric patients), or only one mechanism of injury, trauma registry implementation papers without demographic data, review papers and conference proceedings were excluded. Results: The initial search retrieved 1868 abstracts of which 1324 remained after duplicate removal. After screening the abstracts, 78 full-text articles were scrutinised for their suitability for inclusion. Twenty three papers from 14 countries, including 103,327 patients, were deemed eligible and included for analysis. The median age of trauma victims in these articles was 27 years (IQR 25–29). The median percentage of trauma victims who were male was 75 (IQR 66–84). The median percentage of road traffic injuries (RTIs) as a percentage of total injuries caused by trauma was 46 (IQR 21–71). Conclusions: Young, male, road traffic victims represent a large proportion of the LMIC trauma burden. This information can inform and be used by local and national governments to implement road safety measures and other strategies aimed at reducing the injury rate in young males. PMID:27163066

  20. [Cancer registry of laryngectomized persons in Croatia].

    PubMed

    Pavlić, Blazenka

    2014-03-01

    Cancer poses a major problem in the population of Croatia. Owing to Professor Zivko Kulcar, who founded Cancer Registry at the Institute of Public Health in 1959, statistical data on patients with malignant cancer, including information on the entire territory of the Republic of Croatia, are available. The Act on Official Statistics (Official Gazette 103/2003) and Annual Implementation Plan regulate data recording in Cancer Registry, which is performed by the County Public Health Institutes that control the volume and quality of registration, after which the information is forwarded to the Croatian National Public Health Institute. If information and statistical data are needed for public health or scientific research purposes, one should approach Cancer Registry, having previously filled out a form for aggregated or individual information. However, when requesting information about individuals having undergone laryngectomy, such information is not available. If information about individuals having undergone laryngectomy is needed, e.g., how many of such individuals there are out there, when, where and how they are treated, or their demographic characteristics, such information unfortunately is not available. Therefore, establishment of the registry of patients who have undergone laryngectomy is proposed, which would be maintained by nurses working at ENT departments. PMID:24979893

  1. National Niemann-Pick Disease Foundation

    MedlinePlus

    ... Web Sites and Memorials Fundraising Support Getting Media Coverage Organizations Addressing Lysosome Storage Diseases Request More Information ... NNPDF Newsletters Press Releases NNPDF Webinars Getting Media Coverage Video & Print Resources External Links NNPDF e-Mail ...

  2. National Institute of Allergy and Infectious Diseases

    MedlinePlus

    ... AIDS Influenza Malaria Respiratory Syncytial Virus (RSV) Tuberculosis Zika Virus Find a Funding Opportunity Opportunities & Announcements Types of ... immunologic, and allergic diseases Ebola Virus Particles Middle Zika Virus Learn more about NIAID research to combat the ...

  3. 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. PMID:26436185

  4. Acute coronary syndrome in the elderly: the Malaysian National Cardiovascular Disease Database-Acute Coronary Syndrome registry

    PubMed Central

    Zuhdi, Ahmad Syadi Mahmood; Ahmad, Wan Azman Wan; Zaki, Rafdzah Ahmad; Mariapun, Jeevitha; Ali, Rosli Mohd; Sari, Norashikin Md; Ismail, Muhammad Dzafir; Hian, Sim Kui

    2016-01-01

    INTRODUCTION The elderly are often underrepresented in clinical trials for acute coronary syndrome (ACS), and cardiologists commonly face management dilemmas in the choice of treatment for this group of patients, particularly concerning the use of invasive revascularisation. This study analysed the characteristics of hospitalised elderly patients with ACS, and compared the outcomes of treatments. METHODS From 29 December 2005 to 26 April 2010, 13,545 patients were admitted for ACS in 16 hospitals across Malaysia. These patients were divided into two groups – elderly (≥ 65 years) and non-elderly (< 65 years). The clinical characteristics, treatment received (invasive or non-invasive) and outcomes (in-hospital and 30-day all-cause mortality) of the two groups were compared. The elderly patients were then grouped according to the type of treatment received, and the outcomes of the two subgroups were compared. RESULTS Elderly patients had a higher cardiovascular risk burden and a higher incidence of comorbidities. They were less likely to receive urgent revascularisation for acute ST-segment elevation myocardial infarction (elderly: 73.9% vs. non-elderly: 81.4%) and had longer door-to-needle time (elderly: 60 minutes vs. non-elderly: 50 minutes, p = 0.004). The rate of cardiac catheterisation was significantly lower in the elderly group across all ACS strata. Elderly patients had poorer outcomes than non-elderly patients, but those who received invasive treatment appeared to have better outcomes than those who received non-invasive treatment. CONCLUSION Elderly patients with ACS tend to be undertreated, both invasively and pharmacologically. Invasive treatment seems to yield better outcomes for this group of patients. PMID:26768171

  5. ST-segment depression on the initial electrocardiogram in acute myocardial infarction-prognostic significance and its effect on short-term mortality: A report from the National Registry of Myocardial Infarction (NRMI-2, 3, 4).

    PubMed

    Pitta, Sridevi R; Grzybowski, Mary; Welch, Robert D; Frederick, Paul D; Wahl, Robert; Zalenski, Robert J

    2005-04-01

    This study analyzed 255,256 patients who had acute myocardial infarction and were enrolled in the National Registry of Myocardial Infarction 2, 3, and 4 (1994 to 2002). The objective was to determine in-hospital mortality rate among patients who had ST-segment depression on the initial electrocardiogram. Patients who had ST-segment depression had an in-hospital mortality rate (15.8%) similar to that of patients who had ST-segment elevation or left bundle branch block (15.5%). After adjusting for observed differences, ST-segment depression was associated with only a slightly lower odds ratio (0.91) of mortality compared with ST-segment elevation or left bundle branch block. PMID:15781012

  6. Clinical response to eliglustat in treatment-naïve patients with Gaucher disease type 1: Post-hoc comparison to imiglucerase-treated patients enrolled in the International Collaborative Gaucher Group Gaucher Registry.

    PubMed

    Ibrahim, Jennifer; Underhill, Lisa H; Taylor, John S; Angell, Jennifer; Peterschmitt, M Judith

    2016-09-01

    Eliglustat is a recently approved oral therapy in the United States and Europe for adults with Gaucher disease type 1 who are CYP2D6 extensive, intermediate, or poor metabolizers (> 90% of patients) that has been shown to decrease spleen and liver volume and increase hemoglobin concentrations and platelet counts in untreated adults with Gaucher disease type 1 and maintain these parameters in patients previously stabilized on enzyme replacement therapy. In a post-hoc analysis, we compared the results of eliglustat treatment in treatment-naïve patients in two clinical studies with the results of imiglucerase treatment among a cohort of treatment-naïve patients with comparable baseline hematologic and visceral parameters in the International Collaborative Gaucher Group Gaucher Registry. Organ volumes and hematologic parameters improved from baseline in both treatment groups, with a time course and degree of improvement in eliglustat-treated patients similar to imiglucerase-treated patients. PMID:27408819

  7. Comparison of paclitaxel-eluting stents (Taxus) and everolimus-eluting stents (Xience) in left main coronary artery disease with 3 years follow-up (from the ESTROFA-LM registry).

    PubMed

    De la Torre Hernandez, Jose M; Alfonso, Fernando; Sanchez Recalde, Angel; Jimenez Navarro, Manuel F; Perez de Prado, Armando; Hernandez, Felipe; Abdul-Jawad Altisent, Omar; Roura, Gerard; Garcia Camarero, Tamara; Elizaga, Jaime; Rivero, Fernando; Gimeno, Federico; Calviño, Ramon; Moreu, Jose; Bosa, Francisco; Rumoroso, Jose R; Bullones, Juan A; Gallardo, Arsenio; Fernandez Diaz, Jose A; Ruiz Arroyo, Jose R; Aragon, Victor; Masotti, Monica

    2013-03-01

    Evidence regarding therapy with drug-eluting stents in the left main coronary artery (LM) is based mostly on trials performed with first-generation drug-eluting stents. The aim of this study was to evaluate long-term clinical outcomes after treatment for unprotected LM disease with paclitaxel-eluting stents (PES) and everolimus-eluting stents (EES). The ESTROFA-LM is a multicenter retrospective registry including consecutive patients with unprotected LM disease treated with PES or EES. A total of 770 patients have been included at 21 centers, 415 with treated PES and 355 with EES. Treatment with 2 stents was more frequent with PES (17% vs 10.4%, p = 0.007), whereas intravascular ultrasound was more frequently used with EES (35.2% vs 26%, p = 0.006). The 3-year death and infarction survival rates were 86.1% for PES and 87.3% for EES (p = 0.50) and for death, infarction, and target lesion revascularization were 83.6% versus 82% (p = 0.60), respectively. Definite or probable thrombosis was 1.6% for PES and 1.4% for EES (p = 0.80). The use of 2 stents, age, diabetes, and acute coronary syndromes were independent predictors of mortality. In the subgroup of distal lesions, the use of intravascular ultrasound was an independent predictor of better outcome. Comparison of propensity score-matched groups did not yield differences between the 2 stents. In conclusion, the results of this multicenter registry show comparable safety and efficacy at 3 years for PES and EES in the treatment of LM disease. The use of bifurcation stenting techniques in distal lesions was a relevant independent predictor for events. The use of intravascular ultrasound appears to have a positive impact on patients treated for LM distal disease. PMID:23273715

  8. An international registry for primary ciliary dyskinesia.

    PubMed

    Werner, Claudius; Lablans, Martin; Ataian, Maximilian; Raidt, Johanna; Wallmeier, Julia; Große-Onnebrink, Jörg; Kuehni, Claudia E; Haarman, Eric G; Leigh, Margaret W; Quittner, Alexandra L; Lucas, Jane S; Hogg, Claire; Witt, Michal; Priftis, Kostas N; Yiallouros, Panayiotis; Nielsen, Kim G; Santamaria, Francesca; Ückert, Frank; Omran, Heymut

    2016-03-01

    Primary ciliary dyskinesia (PCD) is a rare autosomal recessive disorder leading to chronic upper and lower airway disease. Fundamental data on epidemiology, clinical presentation, course and treatment strategies are lacking in PCD. We have established an international PCD registry to realise an unmet need for an international platform to systematically collect data on incidence, clinical presentation, treatment and disease course.The registry was launched in January 2014. We used internet technology to ensure easy online access using a web browser under www.pcdregistry.eu. Data from 201 patients have been collected so far. The database is comprised of a basic data form including demographic and diagnostic information, and visit forms designed to monitor the disease course.To establish a definite PCD diagnosis, we used strict diagnostic criteria, which required two to three diagnostic methods in addition to classical clinical symptoms. Preliminary analysis of lung function data demonstrated a mean annual decline of percentage predicted forced expiratory volume in 1 s of 0.59% (95% CI 0.98-0.22).Here, we present the development of an international PCD registry as a new promising tool to advance the understanding of this rare disorder, to recruit candidates for research studies and ultimately to improve PCD care. PMID:26659107

  9. Total pancreatectomy with islet autotransplantation: summary of a National Institute of Diabetes and Digestive and Kidney diseases workshop.

    PubMed

    Bellin, Melena D; Gelrud, Andres; Arreaza-Rubin, Guillermo; Dunn, Ty B; Humar, Abhinav; Morgan, Katherine A; Naziruddin, Bashoo; Rastellini, Cristiana; Rickels, Michael R; Schwarzenberg, Sarah J; Andersen, Dana K

    2014-11-01

    A workshop sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases focused on research gaps and opportunities in total pancreatectomy with islet autotransplantation (TPIAT) for the management of chronic pancreatitis (CP). The session was held on July 23, 2014, and structured into 5 sessions: (1) patient selection, indications, and timing; (2) technical aspects of TPIAT; (3) improving success of islet autotransplantation; (4) improving outcomes after total pancreatectomy; and (5) registry considerations for TPIAT. The current state of knowledge was reviewed; knowledge gaps and research needs were specifically highlighted. Common themes included the need to identify which patients best benefit from and when to intervene with TPIAT, current limitations of the surgical procedure, diabetes remission and the potential for improvement, opportunities to better address pain remission, gastrointestinal complications in this population, and unique features of children with CP considered for TPIAT. The need for a multicenter patient registry that specifically addresses the complexities of CP and total pancreatectomy outcomes as well as postsurgical diabetes outcomes was repeatedly emphasized. PMID:25333399

  10. The growing number of hemophilia registries: Quantity vs. quality.

    PubMed

    Keipert, C; Hesse, J; Haschberger, B; Heiden, M; Seitz, R; van den Berg, H M; Hilger, A

    2015-05-01

    Registries for rare diseases provide a tool for obtaining an overview of the clinical situation and can be used to discover points of improvement and to monitor long-term safety. Registries could also become a powerful tool to provide supporting information for marketing authorization. There is an urgent need for a pan-European or global strategy that supports consistent data. Therefore, transparency in data collection, harmonization of the database structures, and the convergence of scientific approaches are required. PMID:25669198

  11. National Tay-Sachs and Allied Diseases Association, Inc.

    ERIC Educational Resources Information Center

    Exceptional Parent, 1977

    1977-01-01

    Reviewed are the history and organization, purpose and programs, and public services of the National Tay-Sachs and Allied Diseases Association, an organization geared toward eradicating Tay-Sachs disease (a hereditary disorder affecting primarily Jewish infants which generally leads to deterioration and death by the child's fifth year). (SBH)

  12. 45 CFR 2540.203 - When must I conduct a State criminal registry check and a National Sex Offender Public Web site...

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... check and a National Sex Offender Public Web site check on an individual in a covered position? 2540.203... National Sex Offender Public Web site check on an individual in a covered position? (a) The State criminal... enrolls in, or is hired by, your program on or after October 1, 2009. (b) The National Sex Offender...

  13. 45 CFR 2540.203 - When must I conduct a State criminal registry check and a National Sex Offender Public Web site...

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... check and a National Sex Offender Public Web site check on an individual in a covered position? 2540.203... National Sex Offender Public Web site check on an individual in a covered position? (a) The State criminal... enrolls in, or is hired by, your program on or after October 1, 2009. (b) The National Sex Offender...

  14. 45 CFR 2540.203 - When must I conduct a State criminal registry check and a National Sex Offender Public Web site...

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ... check and a National Sex Offender Public Web site check on an individual in a covered position? 2540.203... National Sex Offender Public Web site check on an individual in a covered position? (a) The State criminal... enrolls in, or is hired by, your program on or after October 1, 2009. (b) The National Sex Offender...

  15. [Trauma registries: a health priority, a strategic project for the SEMICYUC].

    PubMed

    Chico Fernández, M; García Fuentes, C; Guerrero López, F

    2013-05-01

    The most efficient approach to traumatologic disease is prevention, but physicians also must supervise care of the victims. An operational and effective trauma registry requires financial support, adequate software, a well-defined population, personnel committed to training, and a detailed process for data collection, reporting, validation and the maintenance of confidentiality. Above all, however, motivation is required. Registries can offer many benefits in relation to these highly prevalent disorders, with an impact in terms of health promotion and even advantages in the form of cost reductions, as well as relief from the suffering caused by trauma (mortality, disability)-contributing to improve the efficiency and quality of critical trauma care. The SEMICYUC has demonstrated its ability to establish and maintain records of national interest, and this should become a priority project. PMID:23507334

  16. Quality control and assurance in hematopoietic stem cell transplantation data registries in Japan and other countries.

    PubMed

    Kuwatsuka, Yachiyo

    2016-01-01

    Observational studies from national and international registries with large volumes of patients are commonly performed to identify superior strategies for hematopoietic stem cell transplantation. Major international and national stem cell transplant registries collect outcome data using electronic data capture systems, and a systematic study support process has been developed. Statistical support for studies is available from some major international registries, and international and national registries also mutually collaborate to promote stem cell transplant outcome studies and transplant-related activities. Transplant registries additionally take measures to improve data quality to further improve the quality of outcome studies by utilizing data capture systems and manual data management. Data auditing can potentially even further improve data quality; however, human and budgetary resources can be limiting factors in system construction and audits of the Japanese transplant registry are not currently performed. PMID:26563189

  17. 77 FR 28890 - National Institute of Diabetes and Digestive and Kidney Diseases Notice of Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-05-16

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Initial Review Group; Kidney, Urologic and Hematologic Diseases D Subcommittee. Date... . Name of Committee: National Institute of Diabetes and Digestive and Kidney Diseases Initial...

  18. 78 FR 28859 - National Institute of Diabetes and Digestive and Kidney Diseases Notice of Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-05-16

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... and Kidney Diseases Initial Review Group; Diabetes, Endocrinology and Metabolic Diseases B... Committee: National Institute of Diabetes and Digestive and Kidney Diseases Initial Review Group;...

  19. 78 FR 9063 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-02-07

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Initial Review Group; Kidney, Urologic and Hematologic Diseases D Subcommittee. Date... . Name of Committee: National Institute of Diabetes and Digestive and Kidney Diseases Initial...

  20. 75 FR 3741 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-01-22

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Initial Review Group; Kidney, Urologic and Hematologic Diseases D Subcommittee. Date... . Name of Committee: National Institute of Diabetes and Digestive and Kidney Diseases Initial...

  1. 78 FR 34110 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-06-06

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis..., and Transplantation Research; 93.856, Microbiology and Infectious Diseases Research,...

  2. 78 FR 10623 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-02-14

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: Microbiology, Infectious Diseases and AIDS Initial Review Group... Diseases Research, National Institutes of Health, HHS) Dated: February 7, 2013. David Clary,...

  3. 78 FR 76847 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-12-19

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis... Allergy and Infectious Diseases Special Emphasis Panel; Limited Competition--Multicenter AIDS Cohort...

  4. 77 FR 16247 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-03-20

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... Allergy and Infectious Diseases, including consideration of personnel qualifications and performance, and... of Intramural Research, National Institute of Allergy and Infectious Diseases, NIH, Building 31,...

  5. 76 FR 30373 - National Institute of Allergy and Infectious Diseases; Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-05-25

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases..., Microbiology and Infectious Diseases Research, National Institutes of Health, HHS) Dated: May 18, 2011... Diseases Special Emphasis Panel; NIAID Investigator Initiated Program Project Applications (P01)....

  6. 77 FR 21789 - National Institute Of Allergy And Infectious Diseases; Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-04-11

    ... HUMAN SERVICES National Institutes of Health National Institute Of Allergy And Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis..., Allergy, Immunology, and Transplantation Research; 93.856, Microbiology and Infectious Diseases...

  7. 76 FR 6626 - National Institute of Allergy and Infectious Diseases; Notice of Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-02-07

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases.... App.), notice is hereby given of meetings of the National Advisory Allergy and Infectious Diseases... Advisory Allergy and Infectious Diseases Council; Allergy, Immunology and Transplantation...

  8. 78 FR 63999 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-10-25

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis... Allergy and Infectious Diseases Special Emphasis Panel; Mechanisms of Cellular Immunity in the...

  9. 77 FR 14816 - National Institute of Allergy and Infectious Diseases Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-03-13

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis... Institute of Allergy and Infectious Diseases Special Emphasis Panel; NIAID Investigator Initiated...

  10. 77 FR 6810 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-02-09

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis..., Allergy, Immunology, and Transplantation Research; 93.856, Microbiology and Infectious Diseases...

  11. 78 FR 18355 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-03-26

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis..., Allergy, Immunology, and Transplantation Research; 93.856, Microbiology and Infectious Diseases...

  12. 76 FR 13195 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-03-10

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis..., Allergy, Immunology, and Transplantation Research; 93.856, Microbiology and Infectious Diseases...

  13. 76 FR 60057 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-09-28

    ... Kidney Diseases Special Emphasis Panel, Cognitive Function in Chronic Disease Ancillary Studies. Date..., Kidney Diseases, Urology and Hematology Research, National Institutes of Health, HHS) Dated: September 21... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and...

  14. Genetics Home Reference: Pompe disease

    MedlinePlus

    ... of Pompe disease: Baby's First Test GeneReview: Glycogen Storage Disease Type II (Pompe Disease) Genetic Testing Registry: Glycogen storage disease type II, infantile Genetic Testing Registry: Glycogen ...

  15. Australia's notifiable disease status, 2013: Annual report of the National Notifiable Diseases Surveillance System.

    PubMed

    2015-09-01

    In 2013, 65 diseases and conditions were nationally notifiable in Australia. States and territories reported a total of 224,434 notifications of communicable diseases to the National Notifiable Diseases Surveillance System, a decrease of 8% on the number of notifications in 2012. In 2013, the most frequently notified diseases were sexually transmissible infections (100,949 notifications, 45% of total notifications), vaccine preventable diseases (59,630 notifications, 26.6% of total notifications), and gastrointestinal diseases (32,536 notifications, 14.5% of total notifications). There were 17,919 notifications of bloodborne diseases; 10,831 notifications of vectorborne diseases; 1,932 notifications of other bacterial infections; 634 notifications of zoonoses and 3 notifications of quarantinable diseases. PMID:26620352

  16. Australia's notifiable disease status, 2014: Annual report of the National Notifiable Diseases Surveillance System.

    PubMed

    2016-01-01

    In 2014, 69 diseases and conditions were nationally notifiable in Australia. States and territories reported a total of 275,581 notifications of communicable diseases to the National Notifiable Diseases Surveillance System, an increase of 22% on the number of notifications in 2013. In 2014, the most frequently notified diseases were sexually transmissible infections (105,719 notifications, 38% of total notifications), vaccine preventable diseases (101,400 notifications, 37% of total notifications), and gastrointestinal diseases (40,367 notifications, 15% of total notifications). There were 17,411 notifications of bloodborne diseases; 8,125 notifications of vectorborne diseases; 1,942 notifications of other bacterial infections; 615 notifications of zoonoses and 2 notifications of quarantinable diseases. Commun Dis Intell 2016;40(1):E48-E145. PMID:27080029

  17. Australia's notifiable disease status, 2012: Annual report of the National Notifiable Diseases Surveillance System.

    PubMed

    2015-03-01

    In 2012, 65 diseases and conditions were nationally notifiable in Australia. States and territories reported a total of 243,822 notifications of communicable diseases to the National Notifiable Diseases Surveillance System, an increase of 2% on the number of notifications in 2011. In 2012, the most frequently notified diseases were sexually transmissible infections (99,250 notifications, 40.7% of total notifications), vaccine preventable diseases (85,810 notifications, 35.2% of total notifications), and gastrointestinal diseases (31,155 notifications, 12.8% of total notifications). There were 16,846 notifications of bloodborne diseases; 8,305 notifications of vector-borne diseases; 1,924 notifications of other bacterial infections; 578 notifications of zoonoses; and 5 notifications of quarantinable diseases. PMID:26063098

  18. The PLDD registry.

    PubMed

    Chambers, R A; Botsford, J A; Fanelli, E

    1995-06-01

    The rapid acceptance of minimally invasive surgery in the United States has largely occurred without statistical proof of its superiority over traditional methods. All players in the healthcare field now see the need for valid outcome studies supporting the efficacy of new treatment techniques. Percutaneous laser disc decompression (PLDD) will gain wide acceptance only if it is statistically shown to be a safe and effective alternative treatment of a lumbar disc herniation. To that end, a central PLDD registry has been developed and implemented into clinical practice at several centers. This article reviews healthcare trends that motivated the creation of this data repository and discusses the history of its development. The currently used PLDD evaluation form is outlined and its utility is discussed. Most importantly, preliminary PLDD results and complications based on the data received are presented and analyzed. PMID:10150649

  19. 77 FR 53208 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-08-31

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases, including consideration of personnel qualifications and performance, and the competence..., National Institute of Diabetes and Digestive and Kidney Diseases, National Institute of Health, Building...

  20. 78 FR 41939 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-07-12

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis... review and funding cycle. Name of Committee: National Institute of Allergy and Infectious...

  1. 78 FR 19275 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-03-29

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases, including consideration of personnel qualifications and performance, and the competence..., National Institute of Diabetes and Digestive, and Kidney Diseases, National Institute of Health, Building...

  2. Determinants of national diarrheal disease burden.

    PubMed

    Green, Sean T; Small, Mitchell J; Casman, Elizabeth A

    2009-02-15

    Diarrheal illness is a leading cause of child mortality in developing nations. Previous longitudinal studies have attempted to identify the factors that contribute to child mortality, but few have examined the determinants of diarrheal illness at a country level. Here we demonstrate the use of Classification and Regression Trees (CART) to predict diarrheal illness from a 192-country data set of country-level attributes and compare the performance of CART with a linear regression model. The CART model identifies improvements in rural sanitation as the most important spending priority for reducing diarrheal illness. We estimate that reducing unmet rural sanitation need worldwide by 65% would save the equivalent of 1.2 million lives annually. PMID:19320148

  3. A statewide cancer registry: the Pennsylvania experience.

    PubMed

    Powell, R L; Dietrich, R J

    1990-12-01

    Pennsylvania has been successful in establishing a statewide cancer registry. The success of this registry results from the efforts of many different groups. The program has benefited from strong legislation making cancer a reportable disease and assigning the responsibility of reporting to hospitals. The PCR has implemented many initiatives to ensure that the cooperation of hospitals in operating the system is maintained, and that there is sufficient knowledge among hospital personnel to ensure complete casefinding. As the amount of statewide incidence data is increased over several years, the utility of these data for program planning and epidemiologic studies will increase greatly. The establishment and ongoing operation of the PCR ensure that cancer incidence data are available in providing answers to questions such as some of those asked following the accident at Three Mile Island. PMID:10108500

  4. Clinical Characteristics of Children With Juvenile Dermatomyositis: The Childhood Arthritis and Rheumatology Research Alliance Registry

    PubMed Central

    Robinson, Angela Byun; Hoeltzel, Mark F.; Wahezi, Dawn M.; Becker, Mara L.; Kessler, Elizabeth A.; Schmeling, Heinrike; Carrasco, Ruy; Huber, Adam M.; Feldman, Brian M.; Reed, Ann M.

    2014-01-01

    Objective To investigate aspects of juvenile dermatomyositis (DM), including disease characteristics and treatment, through a national multicenter registry. Methods Subjects meeting the modified Bohan and Peter criteria for definite juvenile DM were analyzed from the cross-sectional Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry between 2010 and 2012 from 55 US pediatric rheumatology centers. Demographics, disease characteristics, diagnostic assessments, and medication exposure data were collected at enrollment. Results A total of 384 subjects met the criteria for analysis. At enrollment, the median Childhood Myositis Assessment Scale score was 51 (interquartile range [IQR] 46–52), the median Childhood Health Assessment Questionnaire score was 0 (IQR 0–0.5), and the median physician and subject global assessment scores were 1 (IQR 0–2) and 1 (IQR 0–3), respectively, out of a maximum of 10. Of the diagnostic assessments, magnetic resonance imaging was more likely than electromyography or muscle biopsy to show abnormalities. A total of 329 subjects had ≥2 diagnostic studies performed, and >34% of these subjects reported ≥1 negative study. Ninety-five percent had been treated with corticosteroids and 92% with methotrexate, suggesting that these medications were almost universally prescribed for juvenile DM in the US. Conclusion In 2 years, the ongoing CARRA Registry has collected clinical data on 384 children with juvenile DM and has the potential to become one of the largest juvenile DM cohorts in the world. More research is needed about prognostic factors in juvenile DM, and differences in therapy based on manifestations of disease need to be explored by practitioners. This registry provides the infrastructure needed to advance clinical and translational research and represents a major step toward improving outcomes of children with juvenile DM. PMID:23983017

  5. Pulmonary embolism: Epidemiology and registries.

    PubMed

    Monreal, Manuel; Mahé, Isabelle; Bura-Riviere, Alessandra; Prandoni, Paolo; Verhamme, Peter; Brenner, Benjamin; Wells, Phil S; Di Micco, Pierpaolo; Bertoletti, Laurent

    2015-12-01

    Real-life data is important in understanding the needs of patients in routine clinical practice, particularly owing to the fact that almost a quarter of patients with venous thromoboembolism (VTE) have at least one exclusion criterion preventing their recruitment into randomized clinical trials. The Registro Informatizado de Enfermedad Trombo Embólica (RIETE) registry is an ongoing, international, multicentre, prospective registry of consecutive patients presenting with acute VTE. In this chapter, we summarized some of the most relevant data concerning the epidemiology of VTE in the RIETE registry. PMID:26547675

  6. The epidemiology of revision total knee and hip arthroplasty in England and Wales: a comparative analysis with projections for the United States. A study using the National Joint Registry dataset.

    PubMed

    Patel, A; Pavlou, G; Mújica-Mota, R E; Toms, A D

    2015-08-01

    Total knee arthroplasty (TKA) and total hip arthroplasty (THA) are recognised and proven interventions for patients with advanced arthritis. Studies to date have demonstrated a steady increase in the requirement for primary and revision procedures. Projected estimates made for the United States show that by 2030 the demand for primary TKA will grow by 673% and for revision TKA by 601% from the level in 2005. For THA the projected estimates are 174% and 137% for primary and revision surgery, respectively. The purpose of this study was to see if those predictions were similar for England and Wales using data from the National Joint Registry and the Office of National Statistics. Analysis of data for England and Wales suggest that by 2030, the volume of primary and revision TKAs will have increased by 117% and 332%, respectively between 2012 and 2030. The data for the United States translates to a 306% cumulative rate of increase between 2012 and 2030 for revision surgery, which is similar to our predictions for England and Wales. The predictions from the United States for primary TKA were similar to our upper limit projections. For THA, we predicted an increase of 134% and 31% for primary and revision hip surgery, respectively. Our model has limitations, however, it highlights the economic burden of arthroplasty in the future in England and Wales as a real and unaddressed problem. This will have significant implications for the provision of health care and the management of orthopaedic services in the future. PMID:26224824

  7. 77 FR 298 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-01-04

    ...: Microbiology, Infectious Diseases and AIDS Initial Review Group; Microbiology and Infectious Diseases Research... Transplantation Research; 93.856, Microbiology and Infectious Diseases Research, National Institutes of...

  8. 76 FR 28443 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-05-17

    ...: Microbiology, Infectious Diseases and AIDS Initial Review Group, Microbiology and Infectious Diseases Research... Research; 93.856, Microbiology and Infectious Diseases Research, National Institutes of Health, HHS)...

  9. The Lupus Family Registry and Repository

    PubMed Central

    Rasmussen, Astrid; Sevier, Sydney; Kelly, Jennifer A.; Glenn, Stuart B.; Aberle, Teresa; Cooney, Carisa M.; Grether, Anya; James, Ellen; Ning, Jared; Tesiram, Joanne; Morrisey, Jean; Powe, Tiny; Drexel, Mark; Daniel, Wes; Namjou, Bahram; Ojwang, Joshua O.; Nguyen, Kim L.; Cavett, Joshua W.; Te, Jeannie L.; James, Judith A.; Scofield, R. Hal; Moser, Kathy; Gilkeson, Gary S.; Kamen, Diane L.; Carson, Craig W.; Quintero-del-Rio, Ana I.; Ballesteros, Maria del Carmen; Punaro, Marilynn G.; Karp, David R.; Wallace, Daniel J.; Weisman, Michael; Merrill, Joan T.; Rivera, Roberto; Petri, Michelle A.; Albert, Daniel A.; Espinoza, Luis R.; Utset, Tammy O.; Shaver, Timothy S.; Arthur, Eugene; Anaya, Juan-Manuel; Bruner, Gail R.

    2011-01-01

    The Lupus Family Registry and Repository (LFRR) was established with the goal of assembling and distributing materials and data from families with one or more living members diagnosed with SLE, in order to address SLE genetics. In the present article, we describe the problems and solutions of the registry design and biometric data gathering; the protocols implemented to guarantee data quality and protection of participant privacy and consent; and the establishment of a local and international network of collaborators. At the same time, we illustrate how the LFRR has enabled progress in lupus genetics research, answering old scientific questions while laying out new challenges in the elucidation of the biologic mechanisms that underlie disease pathogenesis. Trained staff ascertain SLE cases, unaffected family members and population-based controls, proceeding in compliance with the relevant laws and standards; participant consent and privacy are central to the LFRR’s effort. Data, DNA, serum, plasma, peripheral blood and transformed B-cell lines are collected and stored, and subject to strict quality control and safety measures. Coded data and materials derived from the registry are available for approved scientific users. The LFRR has contributed to the discovery of most of the 37 genetic associations now known to contribute to lupus through 104 publications. The LFRR contains 2618 lupus cases from 1954 pedigrees that are being studied by 76 approved users and their collaborators. The registry includes difficult to obtain populations, such as multiplex pedigrees, minority patients and affected males, and constitutes the largest collection of lupus pedigrees in the world. The LFRR is a useful resource for the discovery and characterization of genetic associations in SLE. PMID:20864496

  10. Lymphatic Anomalies Registry

    ClinicalTrials.gov

    2016-07-26

    Lymphatic Malformation; Generalized Lymphatic Anomaly (GLA); Central Conducting Lymphatic Anomaly; CLOVES Syndrome; Gorham-Stout Disease ("Disappearing Bone Disease"); Blue Rubber Bleb Nevus Syndrome; Kaposiform Lymphangiomatosis; Kaposiform Hemangioendothelioma/Tufted Angioma; Klippel-Trenaunay Syndrome; Lymphangiomatosis

  11. The CARRA Registry

    ClinicalTrials.gov

    2015-11-16

    Juvenile Idiopathic Arthritis; Systemic Lupus Erythematosus; Mixed Connective Tissue Disease; Juvenile Ankylosing Spondylitis; Juvenile Dermatomyositis; Localized Scleroderma; Systemic Sclerosis; Vasculitis; Sarcoid; Fibromyalgia, Primary; Auto-inflammatory Disease; Idiopathic Uveitis Idiopathic

  12. Gender and Geographic Differences in the Prevalence of Autism Spectrum Disorders in Children: Analysis of Data from the National Disability Registry of Taiwan

    ERIC Educational Resources Information Center

    Lai, Der-Chung; Tseng, Yen-Cheng; Hou, Yuh-Ming; Guo, How-Ran

    2012-01-01

    The prevalence of autism spectrum disorders (ASD) in the world has increased dramatically in the recent decades. However, data at the national level are limited, and geographic differences are seldom evaluated. According to the law, the local governments in Taiwan began to certify disabled residents and provide various services in 1980, and the…

  13. Study of disease and symptom prevalence, Newsom Brothers National Priorities List Site, Columbia, Mississippi, Region 4. Final report

    SciTech Connect

    Not Available

    1989-10-01

    Columbia, Mississippi is the site of an abandoned chemical manufacturing plant that was contaminated with several VOCs and was included in the EPA's National Priorities List in 1986. The Agency for Toxic Substances and Disease Registry (ATSDR), in cooperation with the Mississippi State Department of Health, conducted a survey of disease and symptom prevalence. The objective of the survey was to determine whether the community living near the site (within a 1/4 mile radius of two on-site ponds) had an excess prevalence of specific self-reported diseases or symptoms, compared with an appropriate community not situated near the site. The results of the study show that residents ages 12 years and older living near the site reported more constitutional complaints (numbness, tingling or prickling, rash, watery or burning eyes, wheezing chest pain, dizziness) and memory loss than did the comparison community. No significant differences were found in self-reported symptoms or diseases among children in the two areas. No environmental exposure pathways or their resulting toxicological processes are known to explain the uniform increase in symptoms seen in the study. The apparent elevation in reported symptoms may reflect increased perception or recall of conditions by the respondents living near the site.

  14. PCCR: Pancreatic Cancer Collaborative Registry.

    PubMed

    Sherman, Simon; Shats, Oleg; Ketcham, Marsha A; Anderson, Michelle A; Whitcomb, David C; Lynch, Henry T; Ghiorzo, Paola; Rubinstein, Wendy S; Sasson, Aaron R; Grizzle, William E; Haynatzki, Gleb; Feng, Jianmin; Sherman, Alexander; Kinarsky, Leo; Brand, Randall E

    2011-01-01

    The Pancreatic Cancer Collaborative Registry (PCCR) is a multi-institutional web-based system aimed to collect a variety of data on pancreatic cancer patients and high-risk subjects in a standard and efficient way. The PCCR was initiated by a group of experts in medical oncology, gastroenterology, genetics, pathology, epidemiology, nutrition, and computer science with the goal of facilitating rapid and uniform collection of critical information and biological samples to be used in developing diagnostic, prevention and treatment strategies against pancreatic cancer. The PCCR is a multi-tier web application that utilizes Java/JSP technology and has Oracle 10 g database as a back-end. The PCCR uses a "confederation model" that encourages participation of any interested center, irrespective of its size or location. The PCCR utilizes a standardized approach to data collection and reporting, and uses extensive validation procedures to prevent entering erroneous data. The PCCR controlled vocabulary is harmonized with the NCI Thesaurus (NCIt) or Systematized Nomenclature of Medicine-Clinical Terms (SNOMED-CT). The PCCR questionnaire has accommodated standards accepted in cancer research and healthcare. Currently, seven cancer centers in the USA, as well as one center in Italy are participating in the PCCR. At present, the PCCR database contains data on more than 2,700 subjects (PC patients and individuals at high risk of getting this disease). The PCCR has been certified by the NCI Center for Biomedical Informatics and Information Technology as a cancer Biomedical Informatics Grid (caBIG(®)) Bronze Compatible product. The PCCR provides a foundation for collaborative PC research. It has all the necessary prerequisites for subsequent evolution of the developed infrastructure from simply gathering PC-related data into a biomedical computing platform vital for successful PC studies, care and treatment. Studies utilizing data collected in the PCCR may engender new approaches

  15. 76 FR 68615 - National Alzheimer's Disease Awareness Month, 2011

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-11-04

    ... From the Federal Register Online via the Government Publishing Office #0; #0; #0; Presidential Documents #0; #0; #0;#0;Federal Register / Vol. 76 , No. 214 / Friday, November 4, 2011 / Presidential Documents#0;#0; ] Proclamation 8745 of November 1, 2011 National Alzheimer's Disease Awareness Month, 2011 By the President of the United States of America...

  16. The National Tay Sachs and Allied Diseases Association.

    ERIC Educational Resources Information Center

    Zeitlin, Paula

    1986-01-01

    The National Tay-Sachs and Allied Diseases Association is involved in education, research, and prevention of Tay-Sachs, an inherited metabolic disorder which destroys the central nervous system, and over 30 related disorders. The group features a parent peer group network and a support group for carrier couples. (CL)

  17. 75 FR 9911 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-03-04

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel, Seeding Team Science in Diabetes Endocrinology and Metabolic... of Committee: National Institute of Diabetes and Digestive and Kidney Diseases Special Emphasis...

  18. 77 FR 47082 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-08-07

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel; Clinical Trial Cooperative Agreement Grant Review Meeting. ] Date... and Nutrition Research; 93.849, Kidney Diseases, Urology and Hematology Research, National...

  19. 76 FR 38193 - National Institute of Diabetes and Digestive and Kidney Diseases Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-06-29

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  20. 77 FR 10540 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

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    2012-02-22

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel: Genetic and Lifestyle Factors and Risk of Gastrointestinal... and Nutrition Research; 93.849, Kidney Diseases, Urology and Hematology Research, National...

  1. 77 FR 62520 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-10-15

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel; Ancillary Studies to Major Ongoing Clinical Research Studies..., Kidney Diseases, Urology and Hematology Research, National Institutes of Health, HHS) Dated: October...

  2. 76 FR 75888 - National Institute of Allergy and Infectious Diseases; Notice of Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-12-05

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... Infectious Diseases Research, National Institutes of Health, HHS) Dated: November 29, 2011. Jennifer...

  3. 75 FR 49942 - National Institute of Allergy and Infectious Diseases; Notice of Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-08-16

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... Transplantation Research; 93.856, Microbiology and Infectious Diseases Research, National Institutes of...

  4. 75 FR 76478 - National Institute of Allergy and Infectious Diseases; Notice of Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-12-08

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... Transplantation Research; 93.856, Microbiology and Infectious Diseases Research, National Institutes of...

  5. 77 FR 19677 - National Institute of Allergy and Infectious Diseases; Notice of Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-04-02

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases..., Microbiology and Infectious Diseases Research, National Institutes of Health, HHS) Dated: March 26,...

  6. 77 FR 74674 - National Institute of Allergy and Infectious Diseases; Notice of Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-12-17

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... Infectious Diseases Research, National Institutes of Health, HHS) Dated: December 10, 2012. David...

  7. 78 FR 45541 - National Institute of Allergy and Infectious Diseases; Notice of Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-07-29

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... Transplantation Research; 93.856, Microbiology and Infectious Diseases Research, National Institutes of...

  8. 78 FR 737 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meeting

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    2013-01-04

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  9. 78 FR 21960 - National Institute of Allergy And Infectious Diseases; Notice of Closed Meeting

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  12. 76 FR 3147 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-01-19

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel; Fellowships in Digestive Diseases and Nutrition. Date: February... Institute of Diabetes and Digestive and Kidney Diseases Special Emphasis Panel; Lactation and...

  13. Renal replacement therapy in Europe: a summary of the 2013 ERA-EDTA Registry Annual Report with a focus on diabetes mellitus

    PubMed Central

    Kramer, Anneke; Pippias, Maria; Stel, Vianda S.; Bonthuis, Marjolein; Abad Diez, José Maria; Afentakis, Nikolaos; Alonso de la Torre, Ramón; Ambuhl, Patrice; Bikbov, Boris; Bouzas Caamaño, Encarnación; Bubic, Ivan; Buturovic-Ponikvar, Jadranka; Caskey, Fergus J.; Castro de la Nuez, Pablo; Cernevskis, Harijs; Collart, Frederic; Comas Farnés, Jordi; Garcia Bazaga, Maria de los Ángeles; De Meester, Johan; Ferrer Alamar, Manuel; Finne, Patrik; Garneata, Liliana; Golan, Eliezer; G. Heaf, James; Hemmelder, Marc; Ioannou, Kyriakos; Kantaria, Nino; Kolesnyk, Mykola; Kramar, Reinhard; Lassalle, Mathilde; Lezaic, Visnja; Lopot, Frantisek; Macário, Fernando; Magaz, Angela; Martín-Escobar, Eduardo; Metcalfe, Wendy; Ots-Rosenberg, Mai; Palsson, Runolfur; Piñera Celestino, Celestino; Resić, Halima; Rutkowski, Boleslaw; Santiuste de Pablos, Carmen; Spustová, Viera; Stendahl, Maria; Strakosha, Ariana; Süleymanlar, Gültekin; Torres Guinea, Marta; Varberg Reisæter, Anna; Vazelov, Evgueniy; Ziginskiene, Edita; Massy, Ziad A.; Wanner, Christoph; Jager, Kitty J.; Noordzij, Marlies

    2016-01-01

    Background This article provides a summary of the 2013 European Renal Association–European Dialysis and Transplant Association (ERA-EDTA) Registry Annual Report (available at http://www.era-edta-reg.org), with a focus on patients with diabetes mellitus (DM) as the cause of end-stage renal disease (ESRD). Methods In 2015, the ERA-EDTA Registry received data on renal replacement therapy (RRT) for ESRD from 49 national or regional renal registries in 34 countries in Europe and bordering the Mediterranean Sea. Individual patient data were provided by 31 registries, while 18 registries provided aggregated data. The total population covered by the participating registries comprised 650 million people. Results In total, 72 933 patients started RRT for ESRD within the countries and regions reporting to the ERA-EDTA Registry, resulting in an overall incidence of 112 per million population (pmp). The overall prevalence on 31 December 2013 was 738 pmp (n = 478 990). Patients with DM as the cause of ESRD comprised 24% of the incident RRT patients (26 pmp) and 17% of the prevalent RRT patients (122 pmp). When compared with the USA, the incidence of patients starting RRT pmp secondary to DM in Europe was five times lower and the incidence of RRT due to other causes of ESRD was two times lower. Overall, 19 426 kidney transplants were performed (30 pmp). The 5-year adjusted survival for all RRT patients was 60.9% [95% confidence interval (CI) 60.5–61.3] and 50.6% (95% CI 49.9–51.2) for patients with DM as the cause of ESRD. PMID:27274834

  14. 77 FR 37678 - Board of Scientific Counselors, National Center for Environmental Health/Agency for Toxic...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-06-22

    ... HUMAN SERVICES Centers for Disease Control and Prevention Board of Scientific Counselors, National Center for Environmental Health/Agency for Toxic Substances and Disease Registry: Notice of Charter... Scientific Counselors, National Center for Environmental Health/Agency for Toxic Substances and...

  15. Clinical expression of facioscapulohumeral muscular dystrophy in carriers of 1–3 D4Z4 reduced alleles: experience of the FSHD Italian National Registry

    PubMed Central

    Nikolic, Ana; Ricci, Giulia; Sera, Francesco; Bucci, Elisabetta; Govi, Monica; Mele, Fabiano; Rossi, Marta; Ruggiero, Lucia; Vercelli, Liliana; Ravaglia, Sabrina; Brisca, Giacomo; Fiorillo, Chiara; Villa, Luisa; Maggi, Lorenzo; Cao, Michelangelo; D'Amico, Maria Chiara; Siciliano, Gabriele; Antonini, Giovanni; Santoro, Lucio; Mongini, Tiziana; Moggio, Maurizio; Morandi, Lucia; Pegoraro, Elena; Angelini, Corrado; Di Muzio, Antonio; Rodolico, Carmelo; Tomelleri, Giuliano; Grazia D'Angelo, Maria; Bruno, Claudio; Berardinelli, Angela; Tupler, Rossella

    2016-01-01

    Objectives Facioscapulohumeral muscular dystrophy type 1 (FSHD1) has been genetically linked to reduced numbers (≤8) of D4Z4 repeats at 4q35. Particularly severe FSHD cases, characterised by an infantile onset and presence of additional extra-muscular features, have been associated with the shortest D4Z4 reduced alleles with 1–3 repeats (1–3 DRA). We searched for signs of perinatal onset and evaluated disease outcome through the systematic collection of clinical and anamnestic records of de novo and familial index cases and their relatives, carrying 1–3 DRA. Setting Italy. Participants 66 index cases and 33 relatives carrying 1–3 DRA. Outcomes The clinical examination was performed using the standardised FSHD evaluation form with validated inter-rater reliability. To investigate the earliest signs of disease, we designed the Infantile Anamnestic Questionnaire (IAQ). Comparison of age at onset was performed using the non-parametric Wilcoxon rank-sum or Kruskal-Wallis test. Comparison of the FSHD score was performed using a general linear model and Wald test. Kaplan-Meier survival analysis was used to estimate the age-specific cumulative motor impairment risk. Results No patients had perinatal onset. Among index cases, 36 (54.5%) showed the first signs by 10 years of age. The large majority of patients with early disease onset (26 out of 36, 72.2%) were de novo; whereas the majority of patients with disease onset after 10 years of age were familial (16, 53.3%). Comparison of the disease severity outcome between index cases with age at onset before and over 10 years of age, failed to detect statistical significance (Wald test p value=0.064). Of 61 index cases, only 17 (27.9%) presented extra-muscular conditions. Relatives carrying 1–3 DRA showed a large clinical variability ranging from healthy subjects, to patients with severe motor impairment. Conclusions The size of the D4Z4 allele is not always predictive of severe clinical outcome. The high

  16. The sudden unexpected infant death case registry: a method to improve surveillance.

    PubMed

    Shapiro-Mendoza, Carrie K; Camperlengo, Lena T; Kim, Shin Y; Covington, Theresa

    2012-02-01

    This article describes a multistate population-based surveillance system for monitoring sudden unexpected infant deaths (SUIDs) known as the SUID Case Registry pilot program. The pilot program represents collaboration between the Centers for Disease Control and Prevention and the National Center for Child Death Review (NCCDR), which is funded by the Health Resources and Services Administration. The SUID Case Registry builds on existing child death review system activities and protocols. The objectives of the SUID Case Registry are to collect accurate and consistent population-based data about the circumstances and events associated with SUID cases, to improve the completeness and quality of SUID case investigations, and to use a decision-making algorithm with standardized definitions to categorize SUID cases. States who participate in the pilot program commit to review all SUID cases in their state by using their multidisciplinary state and local child death review teams. These teams request and review data from death scene investigators, medical examiners and coroners, law enforcement, social services, pediatric and obstetric providers, and public health per usual, but as part of the pilot program, supplement their SUID case reviews by discussing additional medical, environmental, and behavioral factors, and entering this data using the NCCDR Web-based Case Reporting System. This new surveillance system aims to improve knowledge of factors surrounding SUID events and improve investigation practices. The surveillance system will allow researchers and program planners to create prevention strategies and interventions, ultimately reducing SUIDs and injury-related infant deaths. PMID:22232303

  17. A Complex Contraception Registry

    ClinicalTrials.gov

    2014-12-02

    Diabetes; Cardiovascular Disease; Epilepsy; Migraine; Neurological Disorders; Cancer; Bariatric Surgery Candidate; Organ or Tissue Transplant; Complications; Lupus Erythematosus, Systemic; Other Hematologic Conditions; Other Venous Embolism and Thrombosis

  18. Clinical Cancer Registries - Are They Up for Health Services Research?

    PubMed

    Pobiruchin, Monika; Bochum, Sylvia; Martens, Uwe M; Schramm, Wendelin

    2016-01-01

    Clinical cancer registries are a valuable data source for health services research (HSR). HSR is in need of high quality routine care data for its evaluations. However, the secondary use of routine data - such as documented cancer cases in a disease registry - poses new challenges in terms of data quality, IT-management, documentation processes and data privacy. In the clinical cancer registry Heilbronn-Franken, real-world data from the Giessen Tumor Documentation System (GTDS) was utilized for analyses of patients' disease processes and guideline adherence in follow-up care. A process was developed to map disease state definitions to fields of the GTDS database and extract patients' disease progress information. Thus, the disease process of sub-cohorts could be compared to each other, e.g., comparison of disease free survival of HER2 (human epidermal growth factor receptor 2)-positive and -negative women who were treated with Trastuzumab, a targeted therapy applied in breast cancer. In principle, such comparisons are feasible and of great value for HSR as they depict a routine care setting of a diverse patient cohort. Yet, local documentation practice, missing flow of information from external health care providers or small sub-cohorts impede the analyses of clinical cancer registries data bases and usage for HSR. PMID:27577380

  19. Myotonic Dystrophy Family Registry

    ClinicalTrials.gov

    2016-03-28

    Myotonic Dystrophy; Congenital Myotonic Dystrophy; Myotonic Dystrophy 1; Myotonic Dystrophy 2; Dystrophia Myotonica; Dystrophia Myotonica 1; Dystrophia Myotonica 2; Myotonia Dystrophica; Myotonic Dystrophy, Congenital; Myotonic Myopathy, Proximal; PROMM (Proximal Myotonic Myopathy); Proximal Myotonic Myopathy; Steinert Disease; Steinert Myotonic Dystrophy; Steinert's Disease; Myotonia Atrophica

  20. 77 FR 24720 - Board of Scientific Counselors, National Center for Environmental Health/Agency for Toxic...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-04-25

    ... HUMAN SERVICES Centers for Disease Control and Prevention Board of Scientific Counselors, National Center for Environmental Health/Agency for Toxic Substances and Disease Registry (BSC, NCEH/ ATSDR) In... Disease Control and Prevention (CDC), announces the following meeting of the aforementioned...

  1. Renal replacement therapy in Europe: a summary of the 2012 ERA-EDTA Registry Annual Report

    PubMed Central

    Pippias, Maria; Stel, Vianda S.; Abad Diez, José Maria; Afentakis, Nikolaos; Herrero-Calvo, Jose Antonio; Arias, Manuel; Tomilina, Natalia; Bouzas Caamaño, Encarnación; Buturovic-Ponikvar, Jadranka; Čala, Svjetlana; Caskey, Fergus J.; Castro de la Nuez, Pablo; Cernevskis, Harijs; Collart, Frederic; Alonso de la Torre, Ramón; García Bazaga, Maria de los Ángeles; De Meester, Johan; Díaz, Joan Manuel; Djukanovic, Ljubica; Ferrer Alamar, Manuel; Finne, Patrik; Garneata, Liliana; Golan, Eliezer; González Fernández, Raquel; Gutiérrez Avila, Gonzalo; Heaf, James; Hoitsma, Andries; Kantaria, Nino; Kolesnyk, Mykola; Kramar, Reinhard; Kramer, Anneke; Lassalle, Mathilde; Leivestad, Torbjørn; Lopot, Frantisek; Macário, Fernando; Magaz, Angela; Martín-Escobar, Eduardo; Metcalfe, Wendy; Noordzij, Marlies; Palsson, Runolfur; Pechter, Ülle; Prütz, Karl G.; Ratkovic, Marina; Resić, Halima; Rutkowski, Boleslaw; Santiuste de Pablos, Carmen; Spustová, Viera; Süleymanlar, Gültekin; Van Stralen, Karlijn; Thereska, Nestor; Wanner, Christoph; Jager, Kitty J.

    2015-01-01

    Background This article summarizes the 2012 European Renal Association—European Dialysis and Transplant Association Registry Annual Report (available at www.era-edta-reg.org) with a specific focus on older patients (defined as ≥65 years). Methods Data provided by 45 national or regional renal registries in 30 countries in Europe and bordering the Mediterranean Sea were used. Individual patient level data were received from 31 renal registries, whereas 14 renal registries contributed data in an aggregated form. The incidence, prevalence and survival probabilities of patients with end-stage renal disease (ESRD) receiving renal replacement therapy (RRT) and renal transplantation rates for 2012 are presented. Results In 2012, the overall unadjusted incidence rate of patients with ESRD receiving RRT was 109.6 per million population (pmp) (n = 69 035), ranging from 219.9 pmp in Portugal to 24.2 pmp in Montenegro. The proportion of incident patients ≥75 years varied from 15 to 44% between countries. The overall unadjusted prevalence on 31 December 2012 was 716.7 pmp (n = 451 270), ranging from 1670.2 pmp in Portugal to 146.7 pmp in the Ukraine. The proportion of prevalent patients ≥75 years varied from 11 to 32% between countries. The overall renal transplantation rate in 2012 was 28.3 pmp (n = 15 673), with the highest rate seen in the Spanish region of Catalonia. The proportion of patients ≥65 years receiving a transplant ranged from 0 to 35%. Five-year adjusted survival for all RRT patients was 59.7% (95% confidence interval, CI: 59.3–60.0) which fell to 39.3% (95% CI: 38.7–39.9) in patients 65–74 years and 21.3% (95% CI: 20.8–21.9) in patients ≥75 years. PMID:26034584

  2. 78 FR 38998 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-06-28

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis..., rosenthalla@niaid.nih.gov . Name of Committee: National Institute of Allergy and Infectious Diseases...

  3. 78 FR 31952 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-05-28

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases..., zhuqing.li@nih.gov . Name of Committee: National Institute of Allergy and Infectious Diseases Special... Committee: National Institute of Allergy and Infectious Diseases Special Emphasis Panel; Clinical...

  4. 77 FR 5035 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-02-01

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis... Research; 93.856, Microbiology and Infectious Diseases Research, National Institutes of Health, HHS)...

  5. 77 FR 16845 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-03-22

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis..., lr228v@nih.gov . Name of Committee: National Institute of Allergy and Infectious Diseases...

  6. 77 FR 28396 - National Institute of Allergy and Infectious Diseases Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-05-14

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis... Diseases Research, National Institutes of Health, HHS) Dated: May 8, 2012. Anna P. Snouffer,...

  7. 78 FR 18996 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-03-28

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis... Research; 93.856, Microbiology and Infectious Diseases Research, National Institutes of Health, HHS)...

  8. 77 FR 45644 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-08-01

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis... Research; 93.856, Microbiology and Infectious Diseases Research, National Institutes of Health, HHS)...

  9. 78 FR 70065 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-11-22

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis...@niaid.nih.gov . Name of Committee: National Institute of Allergy and Infectious Diseases...

  10. 76 FR 67749 - National Institute of Allergy And Infectious Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-11-02

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy And Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis...@mail.nih.gov . Name of Committee: National Institute of Allergy and Infectious Diseases...

  11. 78 FR 11897 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-02-20

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  12. 77 FR 76057 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-12-26

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis....maric@nih.gov . Name of Committee: National Institute of Allergy and Infectious Diseases...

  13. 78 FR 13376 - Chronic Wasting Disease Management Plan/Environmental Impact Statement, Shenandoah National Park

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-02-27

    ... National Park Service Chronic Wasting Disease Management Plan/Environmental Impact Statement, Shenandoah... regulations, the National Park Service (NPS) is preparing a Chronic Wasting Disease Management Plan and... National Park and, should the disease become established, to slow the spread of the disease. To ensure...

  14. The Three Mile Island Population Registry.

    PubMed Central

    Goldhaber, M K; Tokuhata, G K; Digon, E; Caldwell, G G; Stein, G F; Lutz, G; Gur, D

    1983-01-01

    Shortly after the March 28, 1979, accident at the Three Mile Island (TMI) nuclear plant outside Harrisburg, Pa., the Pennsylvania Department of Health, in conjunction with the Centers for Disease Control and the U.S. Bureau of the Census, conducted a census of the 35,930 persons residing within 5 miles of the plant. With the help of 150 enumerators, demographic and health-related information was collected on each person to provide baseline data for future short- and long-term epidemiologic studies of the effects of the accident. Individual radiation doses were estimated on the basis of residential location and the amount of time each person spent in the 5-mile area during the 10 days after the accident. Health and behavioral resurveys of the population will be conducted approximately every 5 years. Population-mobility, morbidity, and mortality will be studied yearly by matching the TMI Population Registry with postal records, cancer registry records, and death certificate data. Because the radiation dose from TMI was extremely small, any increase in morbidity or mortality attributable to the accident would be so small as not to be measurable by present methods; however, adverse health effects as a result of psychological stress may occur. Also, a temporary increase in reporting of disease could occur because of increased surveillance and attention to health. PMID:6419276

  15. Vasculitis Pregnancy Registry

    ClinicalTrials.gov

    2016-09-08

    Vasculitis; Behcet's Disease; CNS Vasculitis; Cryoglobulinemic Vasculitis; Eosinophilic Granulomatosis With Polyangiitis (EGPA); Churg-Strauss Syndrome (CSS); Granulomatosis With Polyangiitis (GPA); Wegener's Granulomatosis; IgA Vasculitis; Henoch-Schoenlein Purpura (HSP); Microscopic Polyangiitis (MPA); Polyarteritis Nodosa (PAN); Takayasu Arteritis (TAK); Urticarial Vasculitis; Systemic Vasculitis

  16. Impact of clinical registries on quality of patient care and health outcomes: protocol for a systematic review

    PubMed Central

    Hoque, Dewan Md Emdadul; Kumari, Varuni; Ruseckaite, Rasa; Romero, Lorena; Evans, Sue M

    2016-01-01

    Introduction Many developed countries have regional and national clinical registries aimed at improving health outcomes of patients diagnosed with particular diseases or cared for in particular healthcare settings. Clinical quality registries (CQRs) are clinical registries established with the purpose of monitoring quality of care and providing feedback to improve health outcomes. The aim of this systematic review is to understand the impact of CQRs on (1) mortality/survival; (2) measures of outcome that reflect a process or outcome of healthcare; (3) healthcare utilisation and (4) costs. Methods and analysis The PRISMA-P methodology, checklist and standard strategy using predefined inclusion and exclusion criteria and structured data abstraction tools will be followed. A search of the electronic databases MEDLINE, EMBASE, Cochrane Central Register of Controlled Trials (CENTRAL) and CINAHL will be undertaken, in addition to Google Scholar and grey literature, to identify studies in English covering the period January 1980 to December 2014. Case–control, cohort, randomised controlled trials and controlled clinical trials which describe the registry as an intervention will be eligible for inclusion. Narrative synthesis of study findings will be conducted, guided by a conceptual framework developed to analyse the outcome measure of the registry using defined criteria. If sufficient studies are identified with a similar outcome of interest and measure using the same comparator and time of interval, results will be pooled for random-effects meta-analysis. Test for heterogeneity and sensitivity analysis will be conducted. To identify reporting bias, forest plots and funnel plots will be created and, if required, Egger's test will be conducted. Ethics and dissemination Ethical approval is not required as primary data will not be collected. Review results will be published as a part of thesis, peer-reviewed journal and conferences. Trial registration number CRD

  17. Registries Help Moms Measure Medication Risks

    MedlinePlus

    ... in the case of the North American Antiepileptic Drug Pregnancy Registry, which studies the effects of drugs for ... is taking. For example, the North American Antiepileptic Drug Pregnancy Registry website lists more than 30 medications being ...

  18. 75 FR 62546 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-10-12

    ... personal privacy. Name of Committee: Microbiology, Infectious Diseases and AIDS Initial Review Group... Research; 93.856, Microbiology and Infectious Diseases Research, National Institutes of Health, HHS)...

  19. 78 FR 68857 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meeting

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    2013-11-15

    ... personal privacy. Name of Committee: Microbiology, Infectious Diseases and AIDS Initial Review Group... Research; 93.856, Microbiology and Infectious Diseases Research, National Institutes of Health, HHS)...

  20. 78 FR 52937 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-08-27

    ... and Nutrition Research; 93.849, Kidney Diseases, Urology and Hematology Research, National Institutes... Kidney Diseases Special Emphasis Panel; Time-Sensitive Obesity Research. Date: September 16, 2013....

  1. A specialist leukaemia/lymphoma registry in the UK. Part 1: Incidence and geographical distribution of Hodgkin's disease. Leukaemia Research Fund Data Collection Study Group.

    PubMed Central

    McKinney, P. A.; Alexander, F. E.; Ricketts, T. J.; Williams, J.; Cartwright, R. A.

    1989-01-01

    This paper describes the epidemiology of Hodgkin's disease occurring in parts of the United Kingdom between 1984 and 1986. The cases were carefully diagnosed and the data rigorously cross-checked as part of the larger Leukaemia Research Fund Data Collection Survey of all lymphoid and haematogenous malignancies. The age-specific rates show the lack of an older adult second peak. Spatial variation is examined in some detail. At county and district levels there is little heterogeneity in the distribution of cases. However, at the electoral ward level there were real differences for the younger age group (0-34). PMID:2605103

  2. Retention of the second-line biologic disease-modifying antirheumatic drugs in patients with rheumatoid arthritis failing one tumor necrosis factor alpha inhibitor: data from the BioRx.si registry.

    PubMed

    Rotar, Ziga; Hočevar, Alojzija; Rebolj Kodre, Anamarija; Praprotnik, Sonja; Tomšič, Matija

    2015-10-01

    This study aimed to investigate the retention of the second-line biologic disease-modifying antirheumatic drugs (bDMARDs) in rheumatoid arthritis patients failing their first tumor necrosis factor alpha inhibitor (TNFi). Data was extracted from the Slovenian registry (BioRx.si) on December 15, 2012. Baseline patient characteristics were compared between second-line TNFi and non-TNFi, and potential confounders were identified by the means of binary logistic regression. Differential drug retention was assessed using the Kaplan-Meier method and crude and inverse probability-weighted Cox proportional hazards regression models (Cox model). Two hundred thirty-eight out of 688 patients who received a TNFi as the first biologic were switched to another biologic: 130 to a second-line TNFi and 108 to either rituximab (31.5 %) or tocilizumab (68.5 %) (non-TNFi). Disease activity at starting second-line bDMARD and stopping the first-line TNFi due to either lack of effectiveness or loss of effectiveness were identified as potential confounders. There appears to be a statistically significant retention advantage of the non-TNFi over the second-line TNFi (log rank test, p = 0.000). This advantage is retained even after taking into account the possible effect of confounders which was tested using the inverse probability-weighted Cox model [hazard ratio (HR) 4.39; 95 % confidence interval (CI) 2.62-8.01, p < 0.001]. After the first-line TNFi's failure, a second-line TNFi is more likely to fail earlier than non-TNFi. PMID:26345633

  3. Evaluation and implementation of public health registries.

    PubMed

    Solomon, D J; Henry, R C; Hogan, J G; Van Amburg, G H; Taylor, J

    1991-01-01

    A rapid proliferation of registries has occurred during the last 20 years. Given the long-term commitment of resources associated with registries and limited public health funding, proposals for new registries should be carefully considered before being funded. A registry is defined as a data base of identifiable persons containing a clearly defined set of health and demographic data collected for a specific public health purpose. Criteria for evaluating whether a registry is needed, feasible, or the most effective and efficient means of collecting a specific set of health data are presented. They include an evaluation of the stated purpose; a review of the function, duration, and scope of the registry; consideration of existing alternative data sources; an assessment of the practical feasibility of the registry; the likelihood of sufficient start-up and long-term funding; and an evaluation of the cost effectiveness of the registry. Creating a public health registry is a complex process. A range of technical and organizational skills is required for a registry to be successfully implemented. Eight requirements are identified as crucial for the successful development of a new registry. They include an implementation plan, adequate documentation, quality control procedures, case definition and case-finding (ascertainment) procedures, determination of data elements, data collection and processing procedures, data access policy, and a framework for dissemination of registry data and findings. PMID:1902306

  4. 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...

  5. 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...

  6. 27 CFR 24.115 - Registry number.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2010-04-01 2010-04-01 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...

  7. 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...

  8. 27 CFR 24.115 - Registry number.

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ... 27 Alcohol, Tobacco Products and Firearms 1 2011-04-01 2011-04-01 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...

  9. 78 FR 58325 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-09-23

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel, Bariatric Surgery-- Related Ancillary Studies (R01s). Date... Digestive and Kidney Diseases Special Emphasis Panel, Regulatory Mechanisms in Intestinal Motility...

  10. 75 FR 9231 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-03-01

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel; Metabolic Dysfunction Collaborative Interdisciplinary Science... Diabetes and Digestive and Kidney Diseases Special Emphasis Panel; CAMUS Trial. Date: April 2, 2010....

  11. 75 FR 65365 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-10-22

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel, Genetics of Nephropathy Ancillary Studies. Date: November 15... Digestive and Kidney Diseases Special Emphasis Panel, Consortium for Radiologic Imaging Studies...

  12. 75 FR 1068 - National Institute of Allergy and Infectious Diseases; Notice of Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-01-08

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases..., Immunology, and Transplantation Research; 93.856, Microbiology and Infectious Diseases Research,...

  13. Comparison of provisional with final notifiable disease case counts - National Notifiable Diseases Surveillance System, 2009.

    PubMed

    2013-09-13

    States report notifiable disease cases to CDC through the National Notifiable Diseases Surveillance System (NNDSS). This allows CDC to assist with public health action and monitor infectious diseases across jurisdictional boundaries nationwide. The Morbidity and Mortality Weekly Report (MMWR) is used to disseminate these data on infectious disease incidence. The extent to which the weekly notifiable conditions are overreported or underreported can affect public health understanding of changes in the burden, distribution, and trends in disease, which is essential for control of communicable diseases. NNDSS encourages state health departments to notify CDC of a case when initially reported. These cases are included in the weekly provisional counts. The status of reported cases can change after further investigation by the states, resulting in differences between provisional and final counts. Increased knowledge of these differences can help in guiding the use of information from NNDSS. To quantify the extent to which final counts differ from provisional counts of notifiable infectious disease in the United States, CDC analyzed 2009 NNDSS data for 67 conditions. The results of this analysis demonstrate that for five conditions, final case counts were lower than provisional counts, but for 59 conditions, final counts were higher than provisional counts. The median difference between final and provisional counts was 16.7%; differences were ≤20% for 39 diseases but >50% for 12. These differences occur for various diseases and in all states. Provisional case counts should be interpreted with caution and an understanding of the reporting process. PMID:24025757

  14. Alzheimer's disease research in the context of the national plan to address Alzheimer's disease.

    PubMed

    Snyder, Heather M; Hendrix, James; Bain, Lisa J; Carrillo, Maria C

    2015-01-01

    In 2012, the first National Plan to Address Alzheimer's Disease in the United States (U.S.) was released, a component of the National Alzheimer's Project Act legislation. Since that time, there have been incremental increases in U.S. federal funding for Alzheimer's disease and related dementia research, particularly in the areas of biomarker discovery, genetic link and related biological underpinnings, and prevention studies for Alzheimer's. A central theme in each of these areas has been the emphasis of cross-sector collaboration and private-public partnerships between government, non-profit organizations and for-profit organizations. This paper will highlight multiple private-public partnerships supporting the advancement of Alzheimer's research in the context of the National Plan to Address Alzheimer's. PMID:26096321

  15. Respiratory disease in Canadian First Nations and Inuit children

    PubMed Central

    Kovesi, Thomas

    2012-01-01

    First Nations and Inuit Children are disproportionately affected by respiratory infections such as viral bronchiolitis, pneumonia and tuberculosis. Rates of long-term lung disease following severe respiratory infections early in life, such as bronchiectasis, are also elevated. In contrast, rates of asthma may be somewhat less than in other Canadian children, although rates of poor asthma control are increased. Causes for the high rates of infections include poverty, overcrowding, housing in need of major repairs and better ventilation, and increased exposure to environmental tobacco smoke. Improving these issues will require addressing the social origins of health in First Nations and Inuit communities, including poverty and employment, building more and improving existing housing, and will likely require developing enhanced immunization and surveillance strategies. PMID:23904781

  16. 76 FR 30733 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-05-26

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Initial Review Group, Digestive Diseases and Nutrition C Subcommittee. Date: June 27-28... and Nutrition Research; 93.849, Kidney Diseases, Urology and Hematology Research, National...

  17. 77 FR 76296 - National Institute of Allergy and Infectious Diseases; Notice of Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-12-27

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases.... App.), notice is hereby given of meetings of the National Advisory Allergy and Infectious Diseases... and Infectious Diseases Council. Date: February 4, 2013. Open: 10:30 a.m. to 11:40 a.m. Agenda:...

  18. 76 FR 77241 - National Institute of Allergy and Infectious Diseases; Notice of Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-12-12

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases.... App.), notice is hereby given of meetings of the National Advisory Allergy and Infectious Diseases... and Infectious Diseases Council. Date: January 30, 2012. Open: 10:30 a.m. to 11:40 a.m. Agenda:...

  19. 75 FR 4091 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-01-26

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis Panel; Partnerships in Biodefense Food and Waterborne Diseases. Date: February 9, 2010. Time: 11:45...

  20. 75 FR 16816 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-04-02

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Committee: National Institute of Allergy and Infectious Diseases Special Emphasis... Allergy and Infectious Diseases Special Emphasis Panel, Loan Repayment Program. Date: April 29-30,...

  1. Gestational and Non-gestational Trophoblastic Disease. Guideline of the DGGG, OEGGG and SGGG (S2k Level, AWMF Registry No. 032/049, December 2015)

    PubMed Central

    Tempfer, C.; Horn, L.-C.; Ackermann, S.; Beckmann, M. W.; Dittrich, R.; Einenkel, J.; Günthert, A.; Haase, H.; Kratzsch, J.; Kreissl, M. C.; Polterauer, S.; Ebert, A. D.; Schneider, K. T. M.; Strauss, H. G.; Thiel, F.

    2016-01-01

    Purpose: The aim was to establish an official interdisciplinary guideline, published and coordinated by the German Society of Gynecology and Obstetrics (DGGG). The guideline was developed for use in German-speaking countries. In addition to the Germany Society of Gynecology and Obstetrics, the guideline has also been approved by the Swiss Society of Gynecology and Obstetrics (SGGG) and the Austrian Society of Gynecology and Obstetrics (OEGGG). The aim was to standardize diagnostic procedures and the management of gestational and non-gestational trophoblastic disease in accordance with the principles of evidence-based medicine, drawing on the current literature and the experience of the colleagues involved in compiling the guideline. Methods: This s2k guideline represents the consensus of a representative panel of experts with a range of different professional backgrounds commissioned by the DGGG. Following a review of the international literature and international guidelines on trophoblastic tumors, a structural consensus was achieved in a formalized, multi-step procedure. This was done using uniform definitions, objective assessments, and standardized management protocols. Recommendations: The recommendations of the guideline cover the epidemiology, classification and staging of trophoblastic tumors; the measurement of human chorionic gonadotropin (hCG) levels in serum, and the diagnosis, management, and follow-up of villous trophoblastic tumors (e.g., partial mole, hydatidiform mole, invasive mole) and non-villous trophoblastic tumors (placental site nodule, exaggerated placental site, placental site tumor, epitheloid trophoblastic tumor, and choriocarcinoma). PMID:26941444

  2. 75 FR 14605 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-03-26

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases, including consideration of personnel qualifications and performance, and the competence..., Director, Division of Intramural Research, National Institute of Diabetes and Digestive and Kidney...

  3. 76 FR 80955 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-12-27

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... grant applications. Place: National Institutes of Health, 6700B Rockledge Drive, Bethesda, MD...

  4. 75 FR 30040 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-05-28

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... and evaluate grant applications. Place: National Institutes of Health, 6700B Rockledge Drive,...

  5. 76 FR 72959 - National Institute of Allergy and Infectious Diseases; Notice of Closed Meetings.

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-11-28

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... personal privacy. Name of Copmmittee: National Institute of Allergy and Infectious Diseases Special...-3243, haririmf@niaid.nih.go v. Name of Committee: National Institute of Allergy and Infectious...

  6. 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.

  7. 78 FR 58322 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-09-23

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Initial Review Group, Digestive Diseases and Nutrition C Subcommittee. Date: October 23... Diseases and Nutrition Research; 93.849, Kidney Diseases, Urology and Hematology Research,...

  8. 76 FR 20692 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-04-13

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Initial Review Group; Diabetes, Endocrinology and Metabolic Diseases B Subcommittee. Date...; 93.848, Digestive Diseases and Nutrition Research; 93.849, Kidney Diseases, Urology and...

  9. 75 FR 56119 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-09-15

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel, Fellowships in Digestive Diseases and Nutrition. Date: October 18... Diabetes and Digestive and Kidney Diseases Special Emphasis Panel. Kidney Disease Ancillary Studies....

  10. 76 FR 31618 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-06-01

    ... Kidney Diseases Special Emphasis Panel, Polycystic Kidney Disease. Date: June 23, 2011. Time: 1:30 p.m... Metabolic Research; 93.848, Digestive Diseases and Nutrition Research; 93.849, Kidney Diseases, Urology and... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and...

  11. 78 FR 13360 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-02-27

    ... Kidney Diseases Special Emphasis Panel; Chronic Kidney Disease in Children. Date: April 4, 2013. Time: 11... and Metabolic Research; 93.848, Digestive Diseases and Nutrition Research; 93.849, Kidney Diseases... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and...

  12. Publications list of the United States Transuranium and Uranium Registries, 1968--1993

    SciTech Connect

    Kathren, R.L.; Hunacek, M.; Gervais, T.

    1993-07-01

    The United States Transuranium and Uranium Registries (USTUR) began with the establishment of the National Plutonium Registry in 1968. In 1910, the name was changed to the United States Transuranium Registry to reflect a broader concern with the entire spectrum of transuranium elements, and in 1918, a parallel but separate United States Uranium Registry was created to study the uranium decay series. With similar goals of understanding the biokinetics, dosimetry, and potential health effects of transuranic elements and uranium series based on actual human experience, the two registries were administratively joined in February 1992. Accordingly, compilation and publication of a complete listing and collection of Registries publications for from the inception through July 1993 was undertaken to coincide with the silver anniversary of the Registries. The following criteria were established for the various categories of publications included in the listing of publications: Journal Articles and Conference Proceedings -- Comprised of all known publications in the open peer reviewed scientific literature for research and related activities carried out, funded, or otherwise sponsored, wholly or in part, by the Registries. The peer reviewed literature was taken to include scientific journals and formal published proceedings of scientific meetings. Annual Reports -- These are annual or progress reports published by the Registries. Miscellaneous Publications -- These are professional or scientific publications of staff affiliated with the Registries at the time of publication that do not fit into the above categories. Included are abstracts, book reviews, letters to the editor, articles from the peer reviewed scientific literature and technical reports. Books and Book Chapters -- This category consists of scientific or technical books and book chapters authored by professional staff affiliated with the Registries at the time of preparation.

  13. Patient-reported outcome measures in arthroplasty registries.

    PubMed

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

    2016-07-01

    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

  14. CIRSE Vascular Closure Device Registry

    SciTech Connect

    Reekers, Jim A.; Mueller-Huelsbeck, Stefan; Libicher, Martin; Atar, Eli; Trentmann, Jens; Goffette, Pierre; Borggrefe, Jan; Zelenak, Kamil; Hooijboer, Pieter; Belli, Anna-Maria

    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 (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.

  15. Iranian Pulmonary Arterial Hypertension Registry

    PubMed Central

    Fahimi, Fanak; Sharif-Kashani, Babak; Malek Mohammad, Majid; Saliminejad, Leila; Monjazebi, Fateme

    2015-01-01

    Background: Idiopathic pulmonary arterial hypertension (IPAH) is a fatal disorder with a prevalence of 8.6 per million. We introduce a registry website for IPAH and PAH patients ( www.IPAH.ir) for access and efficient delivery of government-aided and subsidized antihypertensive medications. Materials and Methods: The IPAH registry was opened in November 2009. Information of IPAH and PAH patients with a username and password were uploaded in the site. Data entry was possible only via the physicians and healthcare organizations via internet that were given a personalized username and password for entry. Following the patients’ profile submission, a scientific committee composed of a cardiologist and a pulmonologist who were selected by the Ministry of Health of Iran (MOH), evaluated the data. The eligibility of the patient to receive the medications was confirmed after evaluation. If the patient was eligible, 82% of the Bosentan cost was paid by MOH. Results: To date, one hundred and sixteen patients (82 females, 34 males) have been registered. The mean pulmonary artery pressure by right heart catheterization was 69.24±17 mmHg (ranging from 35 to 110 mmHg). Conclusion: The first online Iranian registry program for IPAH and PAH patients is believed to supply essential information for health care providers in the field. PMID:26528365

  16. 76 FR 24031 - Board of Scientific Counselors, National Center for Environmental Health/Agency for Toxic...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-04-29

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND HUMAN SERVICES Centers for Disease Control and Prevention Board of Scientific Counselors, National Center for Environmental Health/Agency for Toxic Substances and Disease Registry (BSC, NCEH/ ATSDR) In accordance with section 10(a)(2) of the...

  17. 78 FR 32657 - Board of Scientific Counselors, National Center for Environmental Health/Agency for Toxic...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-05-31

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND HUMAN SERVICES Centers for Disease Control and Prevention (CDC) Board of Scientific Counselors, National Center for Environmental Health/Agency for Toxic Substances and Disease Registry (BSC, NCEH/ ATSDR) In accordance with section 10(a)(2) of...

  18. 76 FR 63623 - Board of Scientific Counselors, National Center for Environmental Health/Agency for Toxic...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-10-13

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND HUMAN SERVICES Centers for Disease Control and Prevention Board of Scientific Counselors, National Center for Environmental Health/Agency for Toxic Substances and Disease Registry (BSC, NCEH/ ATSDR) In accordance with section 10(a)(2) of the...

  19. 75 FR 43172 - Board of Scientific Counselors, National Center for Environmental Health/Agency for Toxic...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-07-23

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND HUMAN SERVICES Agency for Toxic Substances and Disease Board of Scientific Counselors, National Center for Environmental Health/Agency for Toxic Substances and Disease Registry (BSC, NCEH/ ATSDR): Notice of Charter Renewal This gives notice under...

  20. 77 FR 58557 - Board of Scientific Counselors, National Center for Environmental Health/Agency for Toxic...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-09-21

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND HUMAN SERVICES Centers for Disease Control and Prevention Board of Scientific Counselors, National Center for Environmental Health/Agency for Toxic Substances and Disease Registry (BSC, NCEH/ ATSDR) In accordance with section 10(a)(2) of the...

  1. World apheresis association--world apheresis registry.

    PubMed

    Stegmayr, B G; Ivanovich, P; Korach, J M; Rock, G; Norda, R; Ramlow, W

    2005-04-01

    In 2002 WAA decided to start a world-wide apheresis registry to gain insight into the extent of treatment, adverse events, and to facilitate contacts among centers when treatment indications are rare and experience limited. Stem cell and other blood products collections intended for therapeutic application can also be entered. The WAA planned to use the French Registry. Its translation into English has not been accomplished and the fiscal obligations for that registry has not, as yet, been determined or considered and approved by the WAA Board. From Dec 2002 the proposed registry (a merged version of the French, Canadian and Swedish registries) can be immediately implemented. We now cordially invite all centers to join that registry. Please, also inform colleagues at other centers in your country to join. E-mail and address lists of colleagues in your country who have not registered will be welcomed. The site is at: Go to World Apheresis Registry; Login code to test the Registry is: al61tms. Then apply for a specific login code for your center. We welcome you to this registry for your input of data. You will not be charged any registration fee. The registry includes a randomization system that can be used for local or multi center studies (randomization by in-center basis allows you to make your own studies). It includes a formula that increases the chance to get a more even distribution between groups also for smaller sample sizes. PMID:15784455

  2. 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

  3. EXCEL Clinical Trial (Universal Registry)

    ClinicalTrials.gov

    2012-11-30

    Chronic Coronary Occlusion; Left Main Coronary Artery Disease; Stent Thrombosis; Vascular Disease; Myocardial Ischemia; Coronary Artery Stenosis; Coronary Disease; Coronary Artery Disease; Coronary Restenosis

  4. Blood pressure and complications in individuals with type 2 diabetes and no previous cardiovascular disease: national population based cohort study

    PubMed Central

    Gudbjörnsdottir, Soffia; Manhem, Karin; Rosengren, Annika; Svensson, Ann-Marie; Miftaraj, Mervete; Franzén, Stefan; Björck, Staffan

    2016-01-01

    Objectives To compare the risk associated with systolic blood pressure that meets current recommendations (that is, below 140 mm Hg) with the risk associated with lower levels in patients who have type 2 diabetes and no previous cardiovascular disease. Design Population based cohort study with nationwide clinical registries, 2006-12. The mean follow-up was 5.0 years. Setting 861 Swedish primary care units and hospital outpatient clinics. Participants 187 106 patients registered in the Swedish national diabetes register who had had type 2 diabetes for at least a year, age 75 or younger, and with no previous cardiovascular or other major disease. Main outcome measures Clinical events were obtained from the hospital discharge and death registers with respect to acute myocardial infarction, stroke, a composite of acute myocardial infarction and stroke (cardiovascular disease), coronary heart disease, heart failure, and total mortality. Hazard ratios were estimated for different levels of baseline systolic blood pressure with clinical characteristics and drug prescription data as covariates. Results The group with the lowest systolic blood pressure (110-119 mm Hg) had a significantly lower risk of non-fatal acute myocardial infarction (adjusted hazard ratio 0.76, 95% confidence interval 0.64 to 0.91; P=0.003), total acute myocardial infarction (0.85, 0.72 to 0.99; P=0.04), non-fatal cardiovascular disease (0.82, 0.72 to 0.93; P=0.002), total cardiovascular disease (0.88, 0.79 to 0.99; P=0.04), and non-fatal coronary heart disease (0.88, 0.78 to 0.99; P=0.03) compared with the reference group (130-139 mm Hg). There was no indication of a J shaped relation between systolic blood pressure and the endpoints, with the exception of heart failure and total mortality. Conclusions Lower systolic blood pressure than currently recommended is associated with significantly lower risk of cardiovascular events in patients with type 2 diabetes. The association between low

  5. Contemporary registries on P2Y12 inhibitors in patients with acute coronary syndromes in Europe: overview and methodological considerations.

    PubMed

    Jukema, J Wouter; Lettino, Maddalena; Widimský, Petr; Danchin, Nicolas; Bardaji, Alfredo; Barrabes, Jose A; Cequier, Angel; Claeys, Marc J; De Luca, Leonardo; Dörler, Jakob; Erlinge, David; Erne, Paul; Goldstein, Patrick; Koul, Sasha M; Lemesle, Gilles; Lüscher, Thomas F; Matter, Christian M; Montalescot, Gilles; Radovanovic, Dragana; Lopez-Sendón, Jose; Tousek, Petr; Weidinger, Franz; Weston, Clive F M; Zaman, Azfar; Zeymer, Uwe

    2015-10-01

    Patient registries that document real-world clinical experience play an important role in cardiology as they complement the data from randomized controlled trials, provide valuable information on drug use and clinical outcomes, and evaluate to what extent guidelines are followed in practice. The Platelet Inhibition Registry in ACS EvalUation Study (PIRAEUS) project is an initiative of registry holders who are managing national or international registries observing patients with acute coronary syndromes (ACS). The aim of PIRAEUS is to systematically compare and combine available information/insights from various European ACS registries with a focus on P2Y12 inhibitors. The present publication introduces the 17 participating registries in a narrative and tabular form, and describes which ACS groups and which dual antiplatelet therapies were investigated. It sets the basis for upcoming publications that will focus on effectiveness and safety of the antiplatelets used. PMID:27532447

  6. Infectious Diseases in a Global Economy - Consequences for Developing Nations

    PubMed Central

    Peter, McDonald AM

    2006-01-01

    Since the end of the cold war the world economy has become dominated by Western [largely US] interests. In this period there have developed several pandemics or epidemics of infectious diseases that have affected most nations. HIV, SARS, Avian Influenza, Hepatitis-C, Bovine Spongiform Encephalopathy, drug-resistant TB, viral zoonoses, are specific examples that will be discussed in terms of their genesis, economic impact and consequences for ways of life in the range of economies – developed, developing and under developed countries. The burden falls most on the underdeveloped countries who are least able to mount the resources to combat the consequences of these global infections. The capability to diagnose, prevent, treat and manage is largely in the hands of commercial interests that are anchored into international trade agreements. This circumstance contrasts with the situation that existed for vaccine development and distribution in the early parts of 20th century. Most countries established “public good” institutions that developed vaccines for public health purposes [diphtheria, tetanus, polio, pneumococcal antisera are examples]. In this 21st century the international capability for developing vaccines is largely in the hands of industry. Thus the developing countries need support of UN or similar global organizations to underwrite product development that suits their needs. The process of product development, safety and efficacy assessment will be presented in a manner that indicates the crucial and essential role of developing nations – and why they should receive fair recognition for their contributions.

  7. The National Institutes of Health undiagnosed diseases program

    PubMed Central

    Tifft, Cynthia J.; Adams, David R.

    2014-01-01

    Purpose of review To review the approach to undiagnosed patients and results of the National Institutes of Health (NIH) undiagnosed diseases program (UDP), and discuss its benefits to patients, academic medical centers, and the greater scientific community. Recent findings The NIH UDP provides comprehensive and collaborative evaluations for patients with objective findings of disease whose diagnoses have long eluded the medical community. Intensive review of patient records, careful phenotyping, and new genomic technologies have resulted in the diagnosis of new and extremely rare conditions, expanded the phenotypes of rare disorders, and determined that symptoms are caused by more than one disorder in a family. Summary Many children and adults with complex phenotypes remain undiagnosed despite years of searching. The most common undiagnosed disorders involve a neurologic phenotype. Comprehensive phenotyping and genomic analysis utilizing nuclear families can provide a diagnosis in some cases and provide good ‘lead’ candidate genes for others. A UDP can be important for patients, academic medical centers, the scientific community, and society. PMID:25313974

  8. National surveillance for meningococcal disease in Japan, 1999-2014.

    PubMed

    Fukusumi, Munehisa; Kamiya, Hajime; Takahashi, Hideyuki; Kanai, Mizue; Hachisu, Yushi; Saitoh, Takehito; Ohnishi, Makoto; Oishi, Kazunori; Sunagawa, Tomimasa

    2016-07-25

    We summarize the epidemiology of Japanese meningococcal disease with serogroup distribution. One hundred seventy-eight meningococcal meningitis cases were reported from April 1999 to March 2013 to the national surveillance system. From April 2013, bacteremia was added to the condition of reporting invasive meningococcal disease (IMD). Since then, 59 IMD cases were reported by the end of 2014. Approximately two thirds of the cases were male and the median age was 56years (range: 0-93years). Only 3% of the cases were <5years old. One third of reported cases were meningitis and the others were bacteremia. The annual incidence (2014) for IMD was 0.028 per 100,000 and case fatality rate (CFR) was 19%. Serogroup Y (42%) was the most dominant serogroup, followed by C (12%), B (7%) and W (3%). Even though the number of reported cases has increased after the amendment of reporting requirements, the incidence of IMD is still low in Japan. Underreporting may play a role in this low incidence. Improving on the limitations of the surveillance system is necessary to capture the true epidemiology and accurate serogroup distribution of IMD cases in Japan, which is essential for making effective recommendations on newly licensed vaccine. PMID:27291085

  9. eXtended MetaData Registry

    Energy Science and Technology Software Center (ESTSC)

    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.

  10. hPSCreg—the human pluripotent stem cell registry

    PubMed Central

    Seltmann, Stefanie; Lekschas, Fritz; Müller, Robert; Stachelscheid, Harald; Bittner, Marie-Sophie; Zhang, Weiping; Kidane, Luam; Seriola, Anna; Veiga, Anna; Stacey, Glyn; Kurtz, Andreas

    2016-01-01

    The human pluripotent stem cell registry (hPSCreg), accessible at http://hpscreg.eu, is a public registry and data portal for human embryonic and induced pluripotent stem cell lines (hESC and hiPSC). Since their first isolation the number of hESC lines has steadily increased to over 3000 and new iPSC lines are generated in a rapidly growing number of laboratories as a result of their potentially broad applicability in biomedicine and drug testing. Many of these lines are deposited in stem cell banks, which are globally established to store tens of thousands of lines from healthy and diseased donors. The Registry provides comprehensive and standardized biological and legal information as well as tools to search and compare information from multiple hPSC sources and hence addresses a translational research need. To facilitate unambiguous identification over different resources, hPSCreg automatically creates a unique standardized name for each cell line registered. In addition to biological information, hPSCreg stores extensive data about ethical standards regarding cell sourcing and conditions for application and privacy protection. hPSCreg is the first global registry that holds both, manually validated scientific and ethical information on hPSC lines, and provides access by means of a user-friendly, mobile-ready web application. PMID:26400179

  11. hPSCreg--the human pluripotent stem cell registry.

    PubMed

    Seltmann, Stefanie; Lekschas, Fritz; Müller, Robert; Stachelscheid, Harald; Bittner, Marie-Sophie; Zhang, Weiping; Kidane, Luam; Seriola, Anna; Veiga, Anna; Stacey, Glyn; Kurtz, Andreas

    2016-01-01

    The human pluripotent stem cell registry (hPSCreg), accessible at http://hpscreg.eu, is a public registry and data portal for human embryonic and induced pluripotent stem cell lines (hESC and hiPSC). Since their first isolation the number of hESC lines has steadily increased to over 3000 and new iPSC lines are generated in a rapidly growing number of laboratories as a result of their potentially broad applicability in biomedicine and drug testing. Many of these lines are deposited in stem cell banks, which are globally established to store tens of thousands of lines from healthy and diseased donors. The Registry provides comprehensive and standardized biological and legal information as well as tools to search and compare information from multiple hPSC sources and hence addresses a translational research need. To facilitate unambiguous identification over different resources, hPSCreg automatically creates a unique standardized name for each cell line registered. In addition to biological information, hPSCreg stores extensive data about ethical standards regarding cell sourcing and conditions for application and privacy protection. hPSCreg is the first global registry that holds both, manually validated scientific and ethical information on hPSC lines, and provides access by means of a user-friendly, mobile-ready web application. PMID:26400179

  12. 77 FR 52750 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

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    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel HALT-PKD DCC. Date: October 17, 2012. Time: 2 p.m. to 4 p.m... of Committee: National Institute of Diabetes and Digestive and Kidney Diseases Special Emphasis...

  13. 75 FR 38817 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

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    2010-07-06

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel, Acute Liver Failure Study. Date: July 22, 2010. Time: 1 p.m. to 2..., Kidney Diseases, Urology and Hematology Research, National Institutes of Health, HHS) Dated: June...

  14. 77 FR 9671 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

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    2012-02-17

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel; Liver Tissue and Cell Distribution System. Date: March 15, 2012... Research; 93.849, Kidney Diseases, Urology and Hematology Research, National Institutes of Health,...

  15. 78 FR 50428 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

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    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel; NIDDK Ancillary R01 Studies on Liver Diseases PAR-12-265. Date..., begumn@niddk.nih.gov . Name of Committee: National Institute of Diabetes and Digestive and...

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  17. 78 FR 55087 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

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    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel; DEM Fellowship Grant Applications Review. Date: October 1-2, 2013...: National Institute of Diabetes and Digestive and Kidney Diseases Special Emphasis Panel; The...

  18. 76 FR 30370 - National Institute of Diabetes and Digestive and Kidney Diseases; Meetings

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    2011-05-25

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Digestive and Kidney Diseases Special Emphasis Panel; NIDDK KUH-Fellowship Review. Date: June 29, 2011. Time... Committee: National Institute of Diabetes and Digestive and Kidney Diseases Special Emphasis Panel;...

  19. 75 FR 56117 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Meetings

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    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Initial Review Group, Kidney, Urologic and Hematologic Diseases D Subcommittee. Date.... woynarowskab@niddk.nih.gov . Name of Committee: National Institute of Diabetes and Digestive and...

  20. 75 FR 39548 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

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    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel; Autoimmune Microbiome in Diabetes Ancillary Studies. Date: July... Research; 93.849, Kidney Diseases, Urology and Hematology Research, National Institutes of Health,...

  1. 77 FR 12860 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

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    2012-03-02

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... KIDNEY DISEASES, including consideration of personnel qualifications and performance, and the competence... and Digestive and Kidney Diseases, National Institutes of Health, Building 10, Room 9N222,...

  2. 75 FR 35821 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

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    2010-06-23

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel; Alagille Syndrome Ancillary Studies. Date July 14, 2010. Time: 3....gov . Name of Committee: National Institute of Diabetes and Digestive and Kidney Diseases...

  3. 77 FR 40368 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

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    2012-07-09

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel, Ancillary Studies to the Intestinal Stem Cells Consortium. Date... Nutrition Research; 93.849, Kidney Diseases, Urology and Hematology Research, National Institutes of...

  4. 78 FR 56906 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Meetings

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    2013-09-16

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Initial Review Group Diabetes, Endocrinology and Metabolic Diseases B Subcommittee. Date....niddk.nih.gov . Name of Committee: National Institute of Diabetes and Digestive and Kidney...

  5. 77 FR 6131 - National Institute of Diabetes and Digestive and Kidney Diseases Notice of Closed Meetings

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    2012-02-07

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel; PAR09-247 Ancillary Studies in Inflammatory Bowel Diseases. Date..., jerkinsa@niddk.nih.gov . Name of Committee: National Institute of Diabetes and Digestive and...

  6. 76 FR 45585 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

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    2011-07-29

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel, Teddy Coordinating Center. Date: August 5, 2011. Time: 2 p.m. to..., Kidney Diseases, Urology and Hematology Research, National Institutes of Health, HHS) Dated: July...

  7. 75 FR 13557 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

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    2010-03-22

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel, LRP Reviews. Date: May 7, 2010. Time: 2 p.m. to 4 p.m. Agenda: To... and Nutrition Research; 93.849, Kidney Diseases, Urology and Hematology Research, National...

  8. 76 FR 17929 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

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    2011-03-31

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel; NIDDK Seeding R24 Applications on Collaborative Team Science in..., Kidney Diseases, Urology and Hematology Research, National Institutes of Health, HHS) Dated: March...

  9. 77 FR 33752 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

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    2012-06-07

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special, Emphasis Panel; Symptoms of Lower Urinary Tract Dysfunction Research Network....nih.gov . Name of Committee: National Institute of Diabetes and Digestive and Kidney Diseases...

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    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel; PAR09-247 Ancillary Clinical Studies: Nephropathy and Urinary...: National Institute of Diabetes and Digestive and Kidney Diseases Special Emphasis Panel;...

  11. 75 FR 11188 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

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    2010-03-10

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel, Liver Disease Ancillary Studies. Date: April 2, 2010. Time: 1 p.m...@extra.niddk.nih.gov . Name of Committee: National Institute of Diabetes and Digestive and...

  12. 77 FR 12855 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

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    2012-03-02

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel, PKA and PKC Targeting Mechanisms. Date: March 14, 2012. Time: 3 p... and Nutrition Research; 93.849, Kidney Diseases, Urology and Hematology Research, National...

  13. 75 FR 80062 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

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    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel, Novel Therapies for NIDDM P01 Application. Date: January 27, 2011....nih.gov . Name of Committee: National Institute of Diabetes and Digestive and Kidney Diseases...

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    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel, Ancillary Study in Necrotizing Enterocolitis. Date: December 1... Research; 93.849, Kidney Diseases, Urology and Hematology Research, National Institutes of Health,...

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    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel; Type 1 Diabetes Mouse Resource. Date: July 23, 2012. Time: 1 p.m....gov . Name of Committee: National Institute of Diabetes and Digestive and Kidney Diseases...

  17. 76 FR 17658 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

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    2011-03-30

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  18. 76 FR 78013 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

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    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel, DEM Fellowship Reviews. Date: January 31, 2011-February 1, 2012....gov . Name of Committee: National Institute of Diabetes and Digestive and Kidney Diseases...

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  1. 78 FR 65343 - National Institute of Allergy and Infectious Diseases; Amended Notice of Meeting

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    2013-10-31

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases; Amended Notice of Meeting Notice is hereby given of a change in the meeting of the National Institute of Allergy and Infectious Diseases Special...

  2. 78 FR 7793 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

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    2013-02-04

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel; Program Project on Differentiation of GI Tract. Date: April 3... Research; 93.849, Kidney Diseases, Urology and Hematology Research, National Institutes of Health,...

  3. 76 FR 78286 - National Institute of Diabetes and Digestive and Kidney Diseases Notice of Closed Meeting

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    2011-12-16

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel, PAR09-247: Ancillary Studies to the ongoing Clincal Research...; 93.849, Kidney Diseases, Urology and Hematology Research, National Institutes of Health, HHS)...

  4. 78 FR 63994 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

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    2013-10-25

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel; Nutrition and Metabolism-Related Ancillary Studies. Date... Research; 93.849, Kidney Diseases, Urology and Hematology Research, National Institutes of Health,...

  5. 78 FR 75358 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

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    2013-12-11

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel; CKD Better Outcomes R34 Planning Grants. Date: January 6, 2014... Research; 93.849, Kidney Diseases, Urology and Hematology Research, National Institutes of Health,...

  6. 77 FR 71430 - National Institute of Diabetes and Digestive and Kidney Diseases Notice of Closed Meeting

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    2012-11-30

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel NIDDK Central Repositories Non-Renewable Sample Access (X01)-PAR11... Nutrition Research; 93.849, Kidney Diseases, Urology and Hematology Research, National Institutes of...

  7. 76 FR 4122 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

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    2011-01-24

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel; R24 Seeding Application. Date: February 3, 2011. Time: 10 a.m. to..., Kidney Diseases, Urology and Hematology Research, National Institutes of Health, HHS) Dated: January...

  8. 76 FR 36931 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

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    2011-06-23

    ... Kidney Diseases Special Emphasis Panel; Liver Disease and Transplantation Ancillary Studies. Date: July... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney..., rushingp@extra.niddk.nih.gov . Name of Committee: National Institute of Diabetes and Digestive and...

  9. 77 FR 4336 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

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    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel; HEV Ancillary Study. Date: March 5, 2012. Time: 11 a.m. to 12:30....gov . Name of Committee: National Institute of Diabetes and Digestive and Kidney Diseases...

  10. 76 FR 34717 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

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    2011-06-14

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel, NIDDK Telephone SEP. Date: July 8, 2011. Time: 11 a.m. to 12 p.m... . Name of Committee: National Institute of Diabetes and Digestive and Kidney Diseases Special...

  11. 75 FR 47309 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

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    2010-08-05

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel, Ancillary Clinical Studies Review Meeting. Date: September 1... Nutrition Research; 93.849, Kidney Diseases, Urology and Hematology Research, National Institutes of...

  12. 78 FR 26792 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

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    2013-05-08

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel; R13 Conference. Date: June 19, 2013. Time: 2:00 p.m. to 5:00 p.m... of Committee: National Institute of Diabetes and Digestive and Kidney Diseases Special Emphasis...

  13. 75 FR 33817 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

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    2010-06-15

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... and Kidney Diseases Special Emphasis Panel, Pathogenic Mechanisms in UTI. Date: July 7, 2010. Time: 1....gov . Name of Committee: National Institute of Diabetes and Digestive and Kidney Diseases...

  14. 78 FR 14098 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

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    2013-03-04

    ... Kidney Diseases Special Emphasis Panel; Ancillary Studies to the Intestinal Stem Cells Consortium. Date... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Nutrition Research; 93.849, Kidney Diseases, Urology and Hematology Research, National Institutes of...

  15. 78 FR 11211 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meeting

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    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel; Program Project on Intestinal Transport. Date: April 5, 2013... Research; 93.849, Kidney Diseases, Urology and Hematology Research, National Institutes of Health,...

  16. 75 FR 15712 - National Institute of Allergy and Infectious Diseases; Notice of Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2010-03-30

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases... Research; 93.856, Microbiology and Infectious Diseases Research, National Institutes of Health, HHS)...

  17. 76 FR 10384 - National Institute of Allergy and Infectious Diseases; Amended Notice of Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-02-24

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health National Institute of Allergy and Infectious Diseases; Amended Notice of Meeting Notice is hereby given of a change in the meeting of the National Advisory Allergy and Infectious Diseases Council,...

  18. 78 FR 21961 - National Institute of Allergy And Infectious Diseases; Notice of Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-04-12

    ... HUMAN SERVICES National Institutes of Health National Institute of Allergy And Infectious Diseases.... 93.855, Allergy, Immunology, and Transplantation Research; 93.856, Microbiology and Infectious Diseases Research, National Institutes of Health, HHS) Dated: April 8, 2013. David Clary, Program...

  19. 78 FR 21381 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-04-10

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel; Glucose Regulation. Date: June 5, 2013. Time: 2:00 p.m. to 4:00 p....gov . Name of Committee: National Institute of Diabetes and Digestive and Kidney Diseases...

  20. 78 FR 17421 - National Institute of Diabetes and Digestive and Kidney Diseases; Notice of Closed Meetings

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-03-21

    ... HUMAN SERVICES National Institutes of Health National Institute of Diabetes and Digestive and Kidney... Kidney Diseases Special Emphasis Panel; George M. O'Brien Urology Cooperative Research Centers (U54....nih.gov . Name of Committee: National Institute of Diabetes and Digestive and Kidney Diseases...