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

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

PubMed Central

2013-01-01

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

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

PubMed

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

2014-02-01

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

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

PubMed Central

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

2017-01-01

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

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

PubMed

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

2014-12-19

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

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.

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

PubMed

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

2016-01-01

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

Cancer registries in four provinces in Turkey: a case study

PubMed Central

2012-01-01

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

Standardising trauma monitoring: the development of a minimum dataset for trauma registries in Australia and New Zealand.

PubMed

Palmer, Cameron S; Davey, Tamzyn M; Mok, Meng Tuck; McClure, Rod J; Farrow, Nathan C; Gruen, Russell L; Pollard, Cliff W

2013-06-01

Trauma registries are central to the implementation of effective trauma systems. However, differences between trauma registry datasets make comparisons between trauma systems difficult. In 2005, the collaborative Australian and New Zealand National Trauma Registry Consortium began a process to develop a bi-national minimum dataset (BMDS) for use in Australasian trauma registries. This study aims to describe the steps taken in the development and preliminary evaluation of the BMDS. A working party comprising sixteen representatives from across Australasia identified and discussed the collectability and utility of potential BMDS fields. This included evaluating existing national and international trauma registry datasets, as well as reviewing all quality indicators and audit filters in use in Australasian trauma centres. After the working party activities concluded, this process was continued by a number of interested individuals, with broader feedback sought from the Australasian trauma community on a number of occasions. Once the BMDS had reached a suitable stage of development, an email survey was conducted across Australasian trauma centres to assess whether BMDS fields met an ideal minimum standard of field collectability. The BMDS was also compared with three prominent international datasets to assess the extent of dataset overlap. Following this, the BMDS was encapsulated in a data dictionary, which was introduced in late 2010. The finalised BMDS contained 67 data fields. Forty-seven of these fields met a previously published criterion of 80% collectability across respondent trauma institutions; the majority of the remaining fields either could be collected without any change in resources, or could be calculated from other data fields in the BMDS. However, comparability with international registry datasets was poor. Only nine BMDS fields had corresponding, directly comparable fields in all the national and international-level registry datasets evaluated. A

Population-based incidence and patterns of cancer in Kamrup Urban Cancer Registry, India.

PubMed

Sharma, Jagannath D; Kataki, Amal C; Vijay, C R

2013-01-01

Cancer is not a notifiable disease in India. The Indian Council of Medical Research (ICMR) initiated the National Cancer Registry Programme in 1982 to measure the burden and pattern of cancer in India. However, no data were available from the northeastern region till 2001 when a WHO- sponsored, ICMR project showed a relatively high frequency of microscopically diagnosed cases of cancer in the region. A population-based cancer registry was established in January 2003 in Guwahati to cover the Kamrup Urban district in the northeastern region of India. We report the data generated in the first 6 years of the registry (2003-08). Information on cancer was obtained by voluntary participation of different sources including major hospitals, diagnostic centres, state referral board and birth and death registry centres within the registry area. A total of 6608 cases were registered during the 6-year period (1 January 2003- 31 December 2008); 3927 were men and 2681 women. The age-adjusted incidence rates were 167.9 per 100000 among men and 133.8 per 100000 among women. The oesophagus was the leading site of cancer among men, comprising 18.3% of all cancers with an age-adjusted rate of 30.7 per 100000. Among women, the breast followed by the cervix uteri were the leading sites of cancer. These two cancers comprised 30% of all cancers among women. Tobacco-related cancers accounted for 58.2% of cancers among men and 26.9% of cancers among women. The patterns observed from the analysis of data from the cancer registry at Guwahati provide comprehensive information on occurrence of cancer and can be valuable for planning cancer control programmes in the region. Copyright 2013, NMJI.

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

PubMed Central

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

2016-01-01

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

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

PubMed

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

2018-01-19

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

Haemopoietic stem cell transplantation in Australia and New Zealand, 1992-2001: progress report from the Australasian Bone Marrow Transplant Recipient Registry.

PubMed

Nivison-Smith, I; Bradstock, K F; Dodds, A J; Hawkins, P A; Szer, J

2005-01-01

Bone marrow and blood stem cell transplantation is now used as curative therapy for a range of haematological malignancies and other conditions. The Australasian Bone Marrow Transplant Recipient Registry (ABMTRR) has recorded transplant activity in Australia since 1992; transplant centres in New Zealand have corresponded with the Registry since 1998. To describe allogeneic and autologous bone marrow and blood stem cell transplantation activity and outcomes in Australia and New Zealand from 1992 to 2001. Each haemopoietic stem cell transplant centre in Australia and New Zealand contributes information to the Registry via a single information form compiled when a transplant is performed. An annual follow-up request is then sent from the Registry to the contributing centre at the anniversary of each individual transplant. Haemopoietic stem cell transplants in Australia have increased in number from 478 in 1992 to 937 in 2001, whereas in New Zealand the number has grown from 91 in 1998 to 105 in 2001, mainly as a result of an increase in autologous blood stem cell transplants. The number of hospitals contributing to the ABMTRR has grown from 20 in 1992 to 37 in 2001. The most common indication for autologous transplantation in 2001 was non-Hodgkin's lymphoma, whereas for allogeneic transplants it was acute myeloid leukaemia. The 9-year actuarial disease-free survival probability for patients aged 16 and above between 1992 and 2000 was 37% for autologous, 39% for allogeneic related donor and 30% for allogeneic unrelated donor transplants. Recurrence of the underlying disease was the main cause of death post-transplant after both allogeneic (26.3% of deaths in the first year and 68.0% of deaths in the second year) and autologous transplants (59.0% and 86.2%). Treatment-related mortality was 16.9% after allogeneic transplantation and 2.1% after autologous transplantation in 2000. The ABMTRR provides a comprehensive source of information on the use of bone marrow

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).

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

Feasibility of Linking Population-Based Cancer Registries and Cancer Center Biorepositories

PubMed Central

McCusker, Margaret E.; Allen, Mark; Fernandez-Ami, Allyn; Gandour-Edwards, Regina

2012-01-01

Purpose: Biospecimen-based research offers tremendous promise as a way to increase understanding of the molecular epidemiology of cancers. Population-based cancer registries can augment this research by providing more clinical detail and long-term follow-up information than is typically available from biospecimen annotations. In order to demonstrate the feasibility of this concept, we performed a pilot linkage between the California Cancer Registry (CCR) and the University of California, Davis Cancer Center Biorepository (UCD CCB) databases to determine if we could identify patients with records in both databases. Methods: We performed a probabilistic data linkage between 2180 UCD CCB biospecimen records collected during the years 2005–2009 and all CCR records for cancers diagnosed from 1988–2009 based on standard data linkage procedures. Results: The 1040 UCD records with a unique medical record number, tissue site, and pathology date were linked to 3.3 million CCR records. Of these, 844 (81.2%) were identified in both databases. Overall, record matches were highest (100%) for cancers of the cervix and testis/other male genital system organs. For the most common cancers, matches were highest for cancers of the lung and respiratory system (93%), breast (91.7%), and colon and rectum (89.5%), and lower for prostate (72.9%). Conclusions: This pilot linkage demonstrated that information on existing biospecimens from a cancer center biorepository can be linked successfully to cancer registry data. Linkages between existing biorepositories and cancer registries can foster productive collaborations and provide a foundation for virtual biorepository networks to support population-based biospecimen research. PMID:24845042

Presenting an Evaluation Model for the Cancer Registry Software.

PubMed

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

2017-12-01

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

Ensuring quality in studies linking cancer registries and biobanks.

PubMed

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

2010-04-01

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

Decision counseling and participation in a pancreas cancer registry.

PubMed

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

2014-01-01

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

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

PubMed

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

2015-01-01

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

Time Trends in Breast Cancer Among Indian Women Population: An Analysis of Population Based Cancer Registry Data.

PubMed

Chaturvedi, Meesha; Vaitheeswaran, K; Satishkumar, K; Das, Priyanka; Stephen, S; Nandakumar, A

2015-12-01

The trends observed in cancer breast among Indian women are an indication of effect of changing lifestyle in population. To draw an appropriate inference regarding the trends of a particular type of cancer in a country, it is imperative to glance at the reliable data collected by Population Based Cancer Registries over a period of time. To give an insight of changing trends of breast cancer which have taken place over a period of time among women in Cancer Registries of India. Breast Cancer trends for invasive breast cancer in women in Indian Registries have varied during the selected period. Occurrence of breast cancers has also shown geographical variation in India. This data was collected by means of a 'Standard Core Proforma' designed by NCRP conforming to the data fields as suggested by International norms. The Proforma was filled by trained Registry workers based on interview/ hospital medical records/ supplementing data by inputs from treating surgeons/radiation oncologists/involved physicians/pathologists. The contents of the Proforma are entered into specifically created software and transmitted electronically to the coordinating center at Bangalore. The registries contributing to more number of years of data are called as older registries, while other recently established registries are called newer registries. While there has been an increase recorded in breast cancer in most of the registries, some of them have recorded an insignificant increase. Comparison of Age Adjusted Rates (AARs) among Indian Registries has been carried out after which trends observed in populations covered by Indian Registries are depicted. A variation in broad age groups of females and the proneness of females developing breast cancer over the period 1982 to 2010 has been shown. Comparisons of Indian registries with International counterparts have also been carried out. There are marked changes in incidence rates of cancer breast which have occurred in respective registries in a

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

PubMed Central

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

2016-01-01

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

Assessing the feasibility of a web-based registry for multiple orphan lung diseases: the Australasian Registry Network for Orphan Lung Disease (ARNOLD) experience.

PubMed

Casamento, K; Laverty, A; Wilsher, M; Twiss, J; Gabbay, E; Glaspole, I; Jaffe, A

2016-04-18

We investigated the feasibility of using an online registry to provide prevalence data for multiple orphan lung diseases in Australia and New Zealand. A web-based registry, The Australasian Registry Network of Orphan Lung Diseases (ARNOLD) was developed based on the existing British Paediatric Orphan Lung Disease Registry. All adult and paediatric respiratory physicians who were members of the Thoracic Society of Australia and New Zealand in Australia and New Zealand were sent regular emails between July 2009 and June 2014 requesting information on patients they had seen with any of 30 rare lung diseases. Prevalence rates were calculated using population statistics. Emails were sent to 649 Australian respiratory physicians and 65 in New Zealand. 231 (32.4%) physicians responded to emails a total of 1554 times (average 7.6 responses per physician). Prevalence rates of 30 rare lung diseases are reported. A multi-disease rare lung disease registry was implemented in the Australian and New Zealand health care settings that provided prevalence data on orphan lung diseases in this region but was limited by under reporting.

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

PubMed

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

2018-04-01

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

The first report of a 5-year period cancer registry in Greece (2009-2013): a pathology-based cancer registry.

PubMed

Patsea, Eleni; Kaklamanis, Loukas; Batistatou, Anna

2018-04-01

Cancer registries are essential in health care, since they allow more accurate planning of necessary health services and evaluation of programs for cancer prevention and control. The Hellenic Society of Pathology (HSP) having recognized the lack of such information in Greece has undertaken the task of a 5-year pathology-based cancer registry in Greece (2009-2013). In this study, > 95% of all pathology laboratories in the national health system hospitals and 100% of pathology laboratories in private hospitals, as well as > 80% of private pathology laboratories have contributed their data. The most common cancer types overall were as follows: breast cancer (18.26%), colorectal cancer (15.49%), prostate cancer (13.49%), and lung cancer (10.24% of all registered cancers). In men, the most common neoplasms were as follows: prostate cancer, colorectal cancer, lung cancer, and gastric cancer. In women, the most common neoplasms were as follows: breast cancer, colorectal cancer, thyroid cancer, and lung cancer. The data on cancer burden in Greece, presented herein, fill the void of cancer information in Greece that affects health care not only nationally but Europe-wise.

The History and Use of Cancer Registry Data by Public Health Cancer Control Programs in the United States

PubMed Central

White, Mary C.; Babcock, Frances; Hayes, Nikki S.; Mariotto, Angela B.; Wong, Faye L.; Kohler, Betsy A.; Weir, Hannah K.

2018-01-01

Because cancer registry data provide a census of cancer cases, registry data can be used to: 1) define and monitor cancer incidence at the local, state, and national levels; 2) investigate patterns of cancer treatment; and 3) evaluate the effectiveness of public health efforts to prevent cancer cases and improve cancer survival. The purpose of this article is to provide a broad overview of the history of cancer surveillance programs in the United States, and illustrate the expanding ways in which cancer surveillance data are being made available and contributing to cancer control programs. The article describes the building of the cancer registry infrastructure and the successful coordination of efforts among the 2 federal agencies that support cancer registry programs, the Centers for Disease Control and Prevention and the National Cancer Institute, and the North American Association of Central Cancer Registries. The major US cancer control programs also are described, including the National Comprehensive Cancer Control Program, the National Breast and Cervical Cancer Early Detection Program, and the Colorectal Cancer Control Program. This overview illustrates how cancer registry data can inform public health actions to reduce disparities in cancer outcomes and may be instructional for a variety of cancer control professionals in the United States and in other countries. PMID:29205307

Cancer prevalence in Italian cancer registry areas: the ITAPREVAL study. ITAPREVAL Working Group.

PubMed

Micheli, A; Francisci, S; Krogh, V; Rossi, A G; Crosignani, P

1999-01-01

To present data on cancer prevalence for the areas covered by Italian cancer registries, by using a standardized set of data collection and elaboration criteria, and a single method of data analysis. Data on over 250,000 patients with cancer, diagnosed between 1978 and 1992, from 11 Italian cancer registries covering about 12% of the Italian population were collected, validated and analyzed according to the unified protocol of the ITAPREVAL project. The method implemented in the PREVAL computer program was used to provide prevalence estimates for the period covered by cancer registration. The total prevalence for each registry and for the pool of all registries was then estimated by correcting for incomplete observations due to the period in which the registration was not yet activated. All prevalence estimates were for 1992. Prevalence figures are presented by cancer site, age, sex, years from diagnosis and registry area. For all malignancies combined, total prevalence ranged from 1,350 per 100,000 inhabitants in Ragusa to 3,650 per 100,000 inhabitants in Romagna, the ratio between these two extremes being 2.7. For the pool of the areas covered by registration cancer prevalence was 3,100 per 100,000 females and 2,250 per 100,000 males. About a third of the total female cases and about half the male cases were diagnosed in the previous five years. Among those aged over 75 years, total prevalence was higher for males than for females: 11,300 versus 8,900 per 100,000 respectively. This is the first large-scale estimate of the burden of cancer in Italy. It is also one of the first studies in the world which was aimed to study cancer prevalence in detail. These data are necessary for predicting health service needs and help in the evaluation of differences in health service demand by sex, age and Italian regions.

The use of tobacco tax revenues to fund the Guam Cancer Registry: A double win for cancer control.

PubMed

David, Annette M; Haddock, Robert L; Bordallo, Renata; Dirige, Janet T; Mery, Les

2017-06-01

Cancer registries that provide reliable data on cancer incidence, mortality and burden are essential to cancer control. However, establishing sustainable local funding mechanisms to support cancer registries remains a challenge in many countries. Guam, an unincorporated Territory of the United States of America in the Western Pacific, enacted a bill that raised tobacco taxes, and earmarked a percentage of tobacco tax revenues to support its Cancer Registry. This provided a reliable funding stream for the Registry, allowing for continued staffing and capacity building; at the same time, youth tobacco consumption decreased following the tax increase. Linking tobacco tax revenues to cancer registry support is a feasible strategy with a double benefit: higher tobacco prices from higher tobacco taxes reduce tobacco-related cancer risk while assuring the long-term viability of systematic cancer data collection and dissemination.

The use of tobacco tax revenues to fund the Guam Cancer Registry: A double win for cancer control

PubMed Central

David, Annette M.; Haddock, Robert L; Bordallo, Renata; Dirige, Janet T.; Mery, Les

2017-01-01

Cancer registries that provide reliable data on cancer incidence, mortality and burden are essential to cancer control. However, establishing sustainable local funding mechanisms to support cancer registries remains a challenge in many countries. Guam, an unincorporated Territory of the United States of America in the Western Pacific, enacted a bill that raised tobacco taxes, and earmarked a percentage of tobacco tax revenues to support its Cancer Registry. This provided a reliable funding stream for the Registry, allowing for continued staffing and capacity building; at the same time, youth tobacco consumption decreased following the tax increase. Linking tobacco tax revenues to cancer registry support is a feasible strategy with a double benefit: higher tobacco prices from higher tobacco taxes reduce tobacco-related cancer risk while assuring the long-term viability of systematic cancer data collection and dissemination. PMID:29130031

Comparing sexual minority cancer survivors recruited through a cancer registry to convenience methods of recruitment.

PubMed

Boehmer, Ulrike; Clark, Melissa A; Timm, Alison; Glickman, Mark; Sullivan, Mairead

2011-01-01

Sexual minority women, defined as having a lesbian or bisexual identity or reporting a preference for a female partner, are not considered by cancer surveillance. This study assesses the representativeness of sexual minority breast cancer survivors, defined as having a lesbian or bisexual identity or reporting a preference for a female partner, who were recruited into a convenience sample compared with a population-based registry sample of sexual minority breast cancer survivors. Long-term survivors of non-metastatic breast cancer who self-reported as sexual minority were recruited from a cancer registry and subsequently from the community using convenience recruitment methods. Sexual minority breast cancer survivors who screened eligible participated in a telephone survey about their quality of life and factors associated therewith. Participants in the convenience sample were similar to the registry-based sample with respect to adjustment to cancer, physical health, trust in physician, coping, social support, and sexual minority experiences. Compared with the convenience sample, breast cancer survivors in the registry sample were more likely married, more educated, diagnosed more recently, at an earlier stage of cancer, and more likely treated with breast-conserving surgery; they differed on adjuvant therapies. Because sexual minority breast cancer survivors who volunteered for the community-based sample shared most characteristics of the sample recruited from the cancer registry, we concluded that the community sample had comparable representational quality. In the absence of cancer surveillance of sexual minorities, thoughtful convenience recruitment methods provide good representational quality convenience samples. Copyright © 2011 Jacobs Institute of Women's Health. Published by Elsevier Inc. All rights reserved.

Uses of cancer registries for public health and clinical research in Europe: Results of the European Network of Cancer Registries survey among 161 population-based cancer registries during 2010-2012.

PubMed

Siesling, S; Louwman, W J; Kwast, A; van den Hurk, C; O'Callaghan, M; Rosso, S; Zanetti, R; Storm, H; Comber, H; Steliarova-Foucher, E; Coebergh, J W

2015-06-01

To provide insight into cancer registration coverage, data access and use in Europe. This contributes to data and infrastructure harmonisation and will foster a more prominent role of cancer registries (CRs) within public health, clinical policy and cancer research, whether within or outside the European Research Area. During 2010-12 an extensive survey of cancer registration practices and data use was conducted among 161 population-based CRs across Europe. Responding registries (66%) operated in 33 countries, including 23 with national coverage. Population-based oncological surveillance started during the 1940-50s in the northwest of Europe and from the 1970s to 1990s in other regions. The European Union (EU) protection regulations affected data access, especially in Germany and France, but less in the Netherlands or Belgium. Regular reports were produced by CRs on incidence rates (95%), survival (60%) and stage for selected tumours (80%). Evaluation of cancer control and quality of care remained modest except in a few dedicated CRs. Variables evaluated were support of clinical audits, monitoring adherence to clinical guidelines, improvement of cancer care and evaluation of mass cancer screening. Evaluation of diagnostic imaging tools was only occasional. Most population-based CRs are well equipped for strengthening cancer surveillance across Europe. Data quality and intensity of use depend on the role the cancer registry plays in the politico, oncomedical and public health setting within the country. Standard registration methodology could therefore not be translated to equivalent advances in cancer prevention and mass screening, quality of care, translational research of prognosis and survivorship across Europe. Further European collaboration remains essential to ensure access to data and comparability of the results. Copyright © 2014 Elsevier Ltd. All rights reserved.

The history and use of cancer registry data by public health cancer control programs in the United States.

PubMed

White, Mary C; Babcock, Frances; Hayes, Nikki S; Mariotto, Angela B; Wong, Faye L; Kohler, Betsy A; Weir, Hannah K

2017-12-15

Because cancer registry data provide a census of cancer cases, registry data can be used to: 1) define and monitor cancer incidence at the local, state, and national levels; 2) investigate patterns of cancer treatment; and 3) evaluate the effectiveness of public health efforts to prevent cancer cases and improve cancer survival. The purpose of this article is to provide a broad overview of the history of cancer surveillance programs in the United States, and illustrate the expanding ways in which cancer surveillance data are being made available and contributing to cancer control programs. The article describes the building of the cancer registry infrastructure and the successful coordination of efforts among the 2 federal agencies that support cancer registry programs, the Centers for Disease Control and Prevention and the National Cancer Institute, and the North American Association of Central Cancer Registries. The major US cancer control programs also are described, including the National Comprehensive Cancer Control Program, the National Breast and Cervical Cancer Early Detection Program, and the Colorectal Cancer Control Program. This overview illustrates how cancer registry data can inform public health actions to reduce disparities in cancer outcomes and may be instructional for a variety of cancer control professionals in the United States and in other countries. Cancer 2017;123:4969-76. Published 2017. This article is a U.S. Government work and is in the public domain in the USA. Published 2017. This article is a U.S. Government work and is in the public domain in the USA.

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.

Analysis and visualization of disease courses in a semantically-enabled cancer registry.

PubMed

Esteban-Gil, Angel; Fernández-Breis, Jesualdo Tomás; Boeker, Martin

2017-09-29

Regional and epidemiological cancer registries are important for cancer research and the quality management of cancer treatment. Many technological solutions are available to collect and analyse data for cancer registries nowadays. However, the lack of a well-defined common semantic model is a problem when user-defined analyses and data linking to external resources are required. The objectives of this study are: (1) design of a semantic model for local cancer registries; (2) development of a semantically-enabled cancer registry based on this model; and (3) semantic exploitation of the cancer registry for analysing and visualising disease courses. Our proposal is based on our previous results and experience working with semantic technologies. Data stored in a cancer registry database were transformed into RDF employing a process driven by OWL ontologies. The semantic representation of the data was then processed to extract semantic patient profiles, which were exploited by means of SPARQL queries to identify groups of similar patients and to analyse the disease timelines of patients. Based on the requirements analysis, we have produced a draft of an ontology that models the semantics of a local cancer registry in a pragmatic extensible way. We have implemented a Semantic Web platform that allows transforming and storing data from cancer registries in RDF. This platform also permits users to formulate incremental user-defined queries through a graphical user interface. The query results can be displayed in several customisable ways. The complex disease timelines of individual patients can be clearly represented. Different events, e.g. different therapies and disease courses, are presented according to their temporal and causal relations. The presented platform is an example of the parallel development of ontologies and applications that take advantage of semantic web technologies in the medical field. The semantic structure of the representation renders it easy to

Regional Cancer Registries – 20 Years and Growing

Cancer.gov

The NCI, Center for Global Health (CGH), the University of California at Irvine, the Middle East Cancer Consortium, and the International Agency for Research on Cancer partnered in support of the training course, held in Ankara, Turkey this past October, on The Uses of Cancer Registry Data in Cancer Control Research.

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

Economic evaluation of Mumbai and its satellite cancer registries: Implications for expansion of data collection☆

PubMed Central

Koyande, Shravani; Subramanian, Sujha; Edwards, Patrick; Hoover, Sonja; Deshmane, Vinay; Tankga, Florence; Dikshit, Rajesh; Saraiya, Mona

2018-01-01

Background The Mumbai Cancer Registry is a population-based cancer registry that has been in operation for more than five decades and has successfully initiated and integrated three satellite registries in Pune, Nagpur, and Aurangabad, each covering specific urban populations of the Indian state Maharashtra. Data collectors at the satellites perform data abstraction, but Mumbai carries out all other core registration activities such as data analysis and quality assurance. Each of the three satellite registries follows the same data collection methodology as the main Mumbai Cancer Registry. This study examines the cost of operating the Mumbai and its satellite cancer registries. Methods We modified and used the Centers for Disease Control and Prevention’s (CDC’s) International Registry Costing Tool (IntRegCosting Tool) to collect cost and resource use data for the Mumbai Cancer Registry and three satellites. Results Almost 60% of the registration expenditure was borne by the Indian Cancer Society, which hosts the Mumbai Cancer Registry, and more than half of the registry expenditure was related to data collection activities. Across the combined registries, 93% of the expenditure was spent on labor. Overall, registration activities had a low cost per case of 226.10 Indian rupees (or a little less than 4.00 US dollars in 2014 [used average exchange rate in 2014: 1 US $ = 60 Indian rupees]). Conclusion The centralization of fixed-cost activities in Mumbai likely resulted in economies of scale in operating the Mumbai and satellite registries, which, together, report on almost 20,000 cancer cases annually. In middle-income countries like India, where financial resources are limited, the operational framework provided by the Mumbai and satellite registries can serve as a model for other registries looking to expand data collection. PMID:27726981

Economic evaluation of Mumbai and its satellite cancer registries: Implications for expansion of data collection.

PubMed

Koyande, Shravani; Subramanian, Sujha; Edwards, Patrick; Hoover, Sonja; Deshmane, Vinay; Tankga, Florence; Dikshit, Rajesh; Saraiya, Mona

2016-12-01

The Mumbai Cancer Registry is a population-based cancer registry that has been in operation for more than five decades and has successfully initiated and integrated three satellite registries in Pune, Nagpur, and Aurangabad, each covering specific urban populations of the Indian state Maharashtra. Data collectors at the satellites perform data abstraction, but Mumbai carries out all other core registration activities such as data analysis and quality assurance. Each of the three satellite registries follows the same data collection methodology as the main Mumbai Cancer Registry. This study examines the cost of operating the Mumbai and its satellite cancer registries. We modified and used the Centers for Disease Control and Prevention's (CDC's) International Registry Costing Tool (IntRegCosting Tool) to collect cost and resource use data for the Mumbai Cancer Registry and three satellites. Almost 60% of the registration expenditure was borne by the Indian Cancer Society, which hosts the Mumbai Cancer Registry, and more than half of the registry expenditure was related to data collection activities. Across the combined registries, 93% of the expenditure was spent on labor. Overall, registration activities had a low cost per case of 226.10 Indian rupees (or a little less than 4.00 US dollars in 2014 [used average exchange rate in 2014: 1 US $=60 Indian rupees]). The centralization of fixed-cost activities in Mumbai likely resulted in economies of scale in operating the Mumbai and satellite registries, which, together, report on almost 20,000 cancer cases annually. In middle-income countries like India, where financial resources are limited, the operational framework provided by the Mumbai and satellite registries can serve as a model for other registries looking to expand data collection. Copyright © 2016 Elsevier Ltd. All rights reserved.

Oral cancer statistics in India on the basis of first report of 29 population-based cancer registries

PubMed Central

Sharma, Swati; Satyanarayana, L; Asthana, Smitha; Shivalingesh, KK; Goutham, Bala Subramanya; Ramachandra, Sujatha

2018-01-01

Objectives: To summarize and provide an overview of age-specific oral cancer incidence reported in 29 population-based cancer registry in India. Materials and Methods: Secondary data on age-adjusted rates (AARs) of incidence of oral cancer and other associated sites for all ages (0–75 years) were collected from the report of the National Cancer Registry Programme 2012–2014 in 29 population-based control registries. Results: Among both males and females, mouth cancer had maximum Age adjusted incidence rates (64.8) in the central zone, while oropharynx cancer had minimum AAR (0) in all regions. Conclusion: Oral cancer incidence increases with age with typical pattern of cancer of associated sites of oral cavity seen in the northeast region. PMID:29731552

Effects of the length of central cancer registry operations on identification of subsequent cancers and on survival estimates.

PubMed

Qiao, Baozhen; Schymura, Maria J; Kahn, Amy R

2016-10-01

Population-based cancer survival analyses have traditionally been based on the first primary cancer. Recent studies have brought this practice into question, arguing that varying registry reference dates affect the ability to identify earlier cancers, resulting in selection bias. We used a theoretical approach to evaluate the extent to which the length of registry operations affects the classification of first versus subsequent cancers and consequently survival estimates. Sequence number central was used to classify tumors from the New York State Cancer Registry, diagnosed 2001-2010, as either first primaries (value=0 or 1) or subsequent primaries (≥2). A set of three sequence numbers, each based on an assumed reference year (1976, 1986 or 1996), was assigned to each tumor. Percent of subsequent cancers was evaluated by reference year, cancer site and age. 5-year relative survival estimates were compared under four different selection scenarios. The percent of cancer cases classified as subsequent primaries was 15.3%, 14.3% and 11.2% for reference years 1976, 1986 and 1996, respectively; and varied by cancer site and age. When only the first primary was included, shorter registry operation time was associated with slightly lower 5-year survival estimates. When all primary cancers were included, survival estimates decreased, with the largest decreases seen for the earliest reference year. Registry operation length affected the identification of subsequent cancers, but the overall effect of this misclassification on survival estimates was small. Survival estimates based on all primary cancers were slightly lower, but might be more comparable across registries. Copyright © 2016 Elsevier Ltd. All rights reserved.

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

PubMed

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

2018-06-08

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

Cancer incidence in North West Algeria (Mascara) 2000-2010: results from a population-based cancer registry

PubMed Central

Benarba, Bachir; Meddah, Boumedienne; Hamdani, Houria

2014-01-01

Cancer is a leading cause of death worldwide accounting for 7.4 million deaths. Cancer has become a major public health concern in Algeria. The aim of the present study was to estimate cancer incidence in Mascara Province based on the population-based cancer registry. We analyzed data from the cancer registry of Mascara covering all cancer cases diagnosed by all methods and included in the registry from 1st January 2000 to 31st December 2010. The results are presented as incidence rates of cases by site, sex, age, and crude rate. Age-standardized rates per 100,000 person-years (ASRs) were calculated, using the direct method of standardization to the world population. A total of 1875 cases of invasive cancer were recorded. The mean age of diagnosis for all cancers was 52.66 ± 0.5 in men and 59.18 ± 0.6 in women. The ASR for all cancers in females was 27.8 per 100,000, and that for males was 23.6 per 100,000. The most important finding of the present study was the high incidence of liver cancer among males and females in Mascara. Among females, breast cancer was the most frequently reported followed by Cervix uteri, liver and colon. The most frequent cancer types in males were lung, colon, esophagus and stomach and liver. Cancer incidence in Mascara province was lower than that reported in other national and regional registries. Findings of the present study revealed high incidence of liver cancer in the province, the highest in Algeria, suggesting high prevalence of risk factors. PMID:26417294

Recruitment of representative samples for low incidence cancer populations: Do registries deliver?

PubMed Central

2011-01-01

Background Recruiting large and representative samples of adolescent and young adult (AYA) cancer survivors is important for gaining accurate data regarding the prevalence of unmet needs in this population. This study aimed to describe recruitment rates for AYAs recruited through a cancer registry with particular focus on: active clinician consent protocols, reasons for clinicians not providing consent and the representativeness of the final sample. Methods Adolescents and young adults aged 14 to19 years inclusive and listed on the cancer registry from January 1 2002 to December 31 2007 were identified. An active clinician consent protocol was used whereby the registry sent a letter to AYAs primary treating clinicians requesting permission to contact the survivors. The registry then sent survivors who received their clinician's consent a letter seeking permission to forward their contact details to the research team. Consenting AYAs were sent a questionnaire which assessed their unmet needs. Results The overall consent rate for AYAs identified as eligible by the registry was 7.8%. Of the 411 potentially eligible survivors identified, just over half (n = 232, 56%) received their clinician's consent to be contacted. Of those 232 AYAs, 65% were unable to be contacted. Only 18 AYAs (7.8%) refused permission for their contact details to be passed on to the research team. Of the 64 young people who agreed to be contacted, 50% (n = 32) completed the questionnaire. Conclusions Cancer registries which employ active clinician consent protocols may not be appropriate for recruiting large, representative samples of AYAs diagnosed with cancer. Given that AYA cancer survivors are highly mobile, alternative methods such as treatment centre and clinic based recruitment may need to be considered. PMID:21235819

Melanoma of the Skin in the Danish Cancer Registry and the Danish Melanoma Database: A Validation Study.

PubMed

Pedersen, Sidsel Arnspang; Schmidt, Sigrun Alba Johannesdottir; Klausen, Siri; Pottegård, Anton; Friis, Søren; Hölmich, Lisbet Rosenkrantz; Gaist, David

2018-05-01

The nationwide Danish Cancer Registry and the Danish Melanoma Database both record data on melanoma for purposes of monitoring, quality assurance, and research. However, the data quality of the Cancer Registry and the Melanoma Database has not been formally evaluated. We estimated the positive predictive value (PPV) of melanoma diagnosis for random samples of 200 patients from the Cancer Registry (n = 200) and the Melanoma Database (n = 200) during 2004-2014, using the Danish Pathology Registry as "gold standard" reference. We further validated tumor characteristics in the Cancer Registry and the Melanoma Database. Additionally, we estimated the PPV of in situ melanoma diagnoses in the Melanoma Database, and the sensitivity of melanoma diagnoses in 2004-2014. The PPVs of melanoma in the Cancer Registry and the Melanoma Database were 97% (95% CI = 94, 99) and 100%. The sensitivity was 90% in the Cancer Registry and 77% in the Melanoma Database. The PPV of in situ melanomas in the Melanoma Database was 97% and the sensitivity was 56%. In the Melanoma Database, we observed PPVs of ulceration of 75% and Breslow thickness of 96%. The PPV of histologic subtypes varied between 87% and 100% in the Cancer Registry and 93% and 100% in the Melanoma Database. The PPVs for anatomical localization were 83%-95% in the Cancer Registry and 93%-100% in the Melanoma Database. The data quality in both the Cancer Registry and the Melanoma Database is high, supporting their use in epidemiologic studies.

The Establishment of an Inflammatory Breast Cancer Registry and Biospecimen Repository

DTIC Science & Technology

2004-08-01

will be presented at the San Antonio Breast Cancer Conference in December, 2004. The clinical data include the observation that approximately one third...of IBC patients are initially diagnosed as having mastitis and are treated with up to five months of antibiotics before the diagnosis of cancer is...developed a national registry of patients with IBC which contains standardized clinical , epidemiological and pathological information. Our registry includes

[Quality management in oncology supported by clinical cancer registries].

PubMed

Klinkhammer-Schalke, Monika; Gerken, Michael; Barlag, Hagen; Tillack, Anett

2015-01-01

Efforts in nationwide quality management for oncology have so far failed to comprehensively document all levels of care. New organizational structures such as population-based clinical cancer registries or certified organ cancer centers were supposed to solve this problem more sufficiently, but they have to be accompanied by valid trans-sectoral documentation and evaluation of clinical data. To measure feasibility and qualitative effectiveness of guideline implementation we approached this problem with a nationwide investigation from 2000 to 2011. The rate of neoadjuvant radio/chemotherapy in stage UICC II/III rectum cancer, cut-off point 80% for separating good from insufficient quality, was used as a quality indicator. The nationwide analysis indicates an increase from 45% to 70%, but only with the implementation strategy of CME. The combination of new structures, evidence-based quality indicators, organ cancer center and clinical cancer registries has shown good feasibility and seems promising. Copyright © 2015. Published by Elsevier GmbH.

Early Detection Research Network Registry for Hereditary Cancer — EDRN Public Portal

Cancer.gov

The EDRN High Risk Registry (HRR)recruits individuals that carry germline mutations for hereditary cancer syndromes, who are willing to participate in biomarker studies. Recruitment is pursued through distribution of recruitment packets. The recruitment packet includes a cover letter, EDRN HRR brochure, consent form, HIPAA authorization, and baseline questionnaire. Upon completion of enrollment materials, each Registry member is provided a Certificate of Confidentiality, which has been issued by the NCI for the EDRN HRR. The EDRN HRR has a website (http://medicine2.creighton.edu/EDRN-Registry). It provides eligibilty, enrollment educational information for individuals who are at high risk of developing hereditary cancer. The EDRN HRR newsletter is published twice each year. These are distributed to EDRN HRR members on an annual basis. Follow-up questionnaires are sent to Registry participants each year. An EDRN HRR database has been established to store demographic data, personal and family history of cancer diagnoses, personal smoking history, female specific history, as well as cancer prevention, detection and treatment information collected on questionnaires. All EDRN HRR questionnaires and database use the EDRN CDEs.

Immunohistochemical testing for colon cancer--what do New Zealand surgeons know?

PubMed

Harper, Simon J; McEwen, Alison R; Dennett, Elizabeth R

2010-11-05

8-12% of colorectal cancers are associated with genetic syndromes. The most common of these is Lynch syndrome (also known as Hereditary Non-Polyposis Colorectal Cancer). Clinical criteria (Besthesda criteria) exist that can be used to identify colorectal cancer patients who may benefit from immunohistochemical screening of their tumour for Lynch syndrome. Treating surgeons need to know these criteria in order to request appropriate testing. The aim of this study was to assess the knowledge of New Zealand surgeons about the Bethesda criteria. We conducted a postal survey of all New Zealand General Surgical Fellows of the Royal Australasian College of Surgeons. Of the surgeons returning surveys 88% knew screening using immunohistochemistry was available; 7% would not refer an abnormal result to a genetic service. Results of the practice based questions showed only 45% of respondents knew that a colorectal cancer diagnosed before the age of 50 was one of the Besthesda criteria. The correct response rates for the rest of the survey ranged from 32-96%. Questions about Lynch syndrome associated cancers returned fewest correct answers. In general, surgeons are poorly informed about cancers associated with Lynch syndrome. The study demonstrates limited awareness of the Besthesda criteria amongst New Zealand General Surgeons. Those treating colorectal cancer should be aware of the classic features of Lynch syndrome and test appropriately.

Development of South Australian-Victorian Prostate Cancer Health Outcomes Research Dataset.

PubMed

Ruseckaite, Rasa; Beckmann, Kerri; O'Callaghan, Michael; Roder, David; Moretti, Kim; Zalcberg, John; Millar, Jeremy; Evans, Sue

2016-01-22

Prostate cancer is the most commonly diagnosed and prevalent malignancy reported to Australian cancer registries, with numerous studies from single institutions summarizing patient outcomes at individual hospitals or States. In order to provide an overview of patterns of care of men with prostate cancer across multiple institutions in Australia, a specialized dataset was developed. This dataset, containing amalgamated data from South Australian and Victorian prostate cancer registries, is called the South Australian-Victorian Prostate Cancer Health Outcomes Research Dataset (SA-VIC PCHORD). A total of 13,598 de-identified records of men with prostate cancer diagnosed and consented between 2008 and 2013 in South Australia and Victoria were merged into the SA-VIC PCHORD. SA-VIC PCHORD contains detailed information about socio-demographic, diagnostic and treatment characteristics of patients with prostate cancer in South Australia and Victoria. Data from individual registries are available to researchers and can be accessed under individual data access policies in each State. The SA-VIC PCHORD will be used for numerous studies summarizing trends in diagnostic characteristics, survival and patterns of care in men with prostate cancer in Victoria and South Australia. It is expected that in the future the SA-VIC PCHORD will become a principal component of the recently developed bi-national Australian and New Zealand Prostate Cancer Outcomes Registry to collect and report patterns of care and standardised patient reported outcome measures of men nation-wide in Australia and New Zealand.

Racial differences in enrolment in a cancer genetics registry.

PubMed

Moorman, Patricia G; Skinner, Celette Sugg; Evans, James P; Newman, Beth; Sorenson, James R; Calingaert, Brian; Susswein, Lisa; Crankshaw, T Sydnee; Hoyo, Cathrine; Schildkraut, Joellen M

2004-08-01

Lower enrolment of minorities into research studies has been reported frequently. Most studies have little information about nonparticipants, making it difficult to identify characteristics associated with enrolment and how they might vary by race. Women who had previously participated in a population-based, case-control study of breast cancer in North Carolina were invited to enroll in a cancer genetics registry. Detailed questionnaire data on sociodemographic characteristics and cancer risk factors were available for all women. We compared characteristics of women who agreed to be in the registry with those who were deceased, were unlocatable, or declined enrolment. Unconditional logistic regression analyses were done to identify predictors of enrolment. Enrolment rates were markedly lower among African Americans than Whites (15% and 36%, respectively) due to both lower contact rates (41% versus 63%) and lower enrolment rates among those contacted (37% versus 58%). Logistic regression models suggested that racial differences in enrolment were not due to socioeconomic characteristics or other cancer risk factors; race was the only significant predictor of enrolment in multivariable models (odds ratio 0.41, 95% confidence interval 0.23-0.72). Although all women had previously taken part in a research study, African American women were less likely to enroll in the cancer genetics registry than White women. A possible explanation of these findings is that studies of genetics may present particular concerns for African Americans. Further research is needed to identify attitudes and issues that present barriers to participation among minorities.

Estimating canine cancer incidence: findings from a population-based tumour registry in northwestern Italy.

PubMed

Baioni, Elisa; Scanziani, Eugenio; Vincenti, Maria Claudia; Leschiera, Mauro; Bozzetta, Elena; Pezzolato, Marzia; Desiato, Rosanna; Bertolini, Silvia; Maurella, Cristiana; Ru, Giuseppe

2017-06-28

Canine cancer registry data can be put to good use in epidemiological studies. Quantitative comparison of tumour types may reveal unusual cancer frequencies, providing directions for research and generation of hypotheses of cancer causation in a specific area, and suggest leads for identifying risk factors. Here we report canine cancer incidence rates calculated from a population-based registry in an area without any known specific environmental hazard. In its 90 months of operation from 2001 to 2008 (the observation period in this study), the population-based Piedmont Canine Cancer Registry collected data on 1175 tumours confirmed by histopathological diagnosis. The incidence rate was 804 per 100,000 dog-years for malignant tumours and 897 per 100,000 dog-years for benign tumours. Higher rates for all cancers were observed in purebred dogs, particularly in Yorkshire terrier and Boxer. The most prevalent malignant neoplasms were cutaneous mastocytoma and hemangiopericytoma, and mammary gland complex carcinoma and simplex carcinoma. The Piedmont canine cancer registry is one of few of its kind whose operations have been consistently supported by long-term public funding. The registry-based cancer incidence rates were estimated with particular attention to the validity of data collection, thus minimizing the potential for bias. The findings on cancer incidence rates may provide a reliable reference for comparison studies. Researches conducted on dogs, used as sentinels for community exposure to environmental carcinogens, can be useful to detect excess risks in the incidence of malignant tumours in the human population.

Alcohol-attributable cancer deaths under 80 years of age in New Zealand.

PubMed

Connor, Jennie; Kydd, Robyn; Maclennan, Brett; Shield, Kevin; Rehm, Jürgen

2017-05-01

Cancer deaths made up 30% of all alcohol-attributable deaths in New Zealanders aged 15-79 years in 2007, more than all other chronic diseases combined. We aimed to estimate alcohol-attributable cancer mortality and years of life lost by cancer site and identify differences between Māori and non-Māori New Zealanders. We applied the World Health Organization's comparative risk assessment methodology at the level of Māori and non-Māori subpopulations. Proportions of specific alcohol-related cancers attributable to alcohol were calculated by combining alcohol consumption estimates from representative surveys with relative risks from recent meta-analyses. These proportions were applied to both 2007 and 2012 mortality data. Alcohol consumption was responsible for 4.2% of all cancer deaths under 80 years of age in 2007. An average of 10.4 years of life was lost per person; 12.7 years for Māori and 10.1 years for non-Māori. Half of the deaths were attributable to average consumption of <4 standard drinks per day. Breast cancer comprised 61% of alcohol-attributable cancer deaths in women, and more than one-third of breast cancer deaths were attributable to average consumption of <2 standard drinks per day. Mortality data from 2012 produced very similar findings. Alcohol is an important and modifiable cause of cancer. Risk of cancer increases with higher alcohol consumption, but there is no safe level of drinking. Reduction in population alcohol consumption would reduce cancer deaths. Additional strategies to reduce ethnic disparities in risk and outcome are needed in New Zealand. [Connor J, Kydd R, Maclennan B, Shield K, Rehm J. Alcohol-attributable cancer deaths under 80 years of age in New Zealand. Drug Alcohol Rev 2017;36:415-423]. © 2016 Australasian Professional Society on Alcohol and other Drugs.

Common data items in seven European oesophagogastric cancer surgery registries: towards a European upper GI cancer audit (EURECCA Upper GI).

PubMed

de Steur, W O; Henneman, D; Allum, W H; Dikken, J L; van Sandick, J W; Reynolds, J; Mariette, C; Jensen, L; Johansson, J; Kolodziejczyk, P; Hardwick, R H; van de Velde, C J H

2014-03-01

Seven countries (Denmark, France, Ireland, the Netherlands, Poland, Sweden, United Kingdom) collaborated to initiate a EURECCA (European Registration of Cancer Care) Upper GI project. The aim of this study was to identify a core dataset of shared items in the different data registries which can be used for future collaboration between countries. Item lists from all participating Upper GI cancer registries were collected. Items were scored 'present' when included in the registry, or when the items could be deducted from other items in the registry. The definition of a common item was that it was present in at least six of the seven participating countries. The number of registered items varied between 40 (Poland) and 650 (Ireland). Among the 46 shared items were data on patient characteristics, staging and diagnostics, neoadjuvant treatment, surgery, postoperative course, pathology, and adjuvant treatment. Information on non-surgical treatment was available in only 4 registries. A list of 46 shared items from seven participating Upper GI cancer registries was created, providing a basis for future quality assurance and research in Upper GI cancer treatment on a European level. Copyright © 2013 Elsevier Ltd. All rights reserved.

Protecting Confidentiality in Cancer Registry Data With Geographic Identifiers.

PubMed

Yu, Mandi; Reiter, Jerome Phillip; Zhu, Li; Liu, Benmei; Cronin, Kathleen A; Feuer, Eric J Rocky

2017-07-01

The National Cancer Institute's Surveillance, Epidemiology, and End Results Program releases research files of cancer registry data. These files include geographic information at the county level, but no finer. Access to finer geography, such as census tract identifiers, would enable richer analyses-for example, examination of health disparities across neighborhoods. To date, tract identifiers have been left off the research files because they could compromise the confidentiality of patients' identities. We present an approach to inclusion of tract identifiers based on multiply imputed, synthetic data. The idea is to build a predictive model of tract locations, given patient and tumor characteristics, and randomly simulate the tract of each patient by sampling from this model. For the predictive model, we use multivariate regression trees fitted to the latitude and longitude of the population centroid of each tract. We implement the approach in the registry data from California. The method results in synthetic data that reproduce a wide range (but not all) of analyses of census tract socioeconomic cancer disparities and have relatively low disclosure risks, which we assess by comparing individual patients' actual and synthetic tract locations. We conclude with a discussion of how synthetic data sets can be used by researchers with cancer registry data. Published by Oxford University Press on behalf of the Johns Hopkins Bloomberg School of Public Health 2017. This work is written by (a) US Government employee(s) and is in the public domain in the US.

Pseudonyms for cancer registries.

PubMed

Pommerening, K; Miller, M; Schmidtmann, I; Michaelis, J

1996-06-01

In order to conform to the rigid German legislation on data privacy and security we developed a new concept of data flow and data storage for population-based cancer registries. A special trusted office generates a pseudonym for each case by a cryptographic procedure. This office also handles the notification of cases and communicates with the reporting physicians. It passes pseudonymous records to the registration office for permanent storage. The registration office links the records according to the pseudonyms. Starting from a requirements analysis we show how to construct the pseudonyms; we then show that they meet the requirements. We discuss how the pseudonyms have to be protected by cryptographic and organizational means. A pilot study showed that the proposed procedure gives acceptable synonym and homonym error rates. The methods described are not restricted to cancer registration and may serve as a model for comparable applications in medical informatics.

Paternal lineage early onset hereditary ovarian cancers: A Familial Ovarian Cancer Registry study.

PubMed

Eng, Kevin H; Szender, J Brian; Etter, John Lewis; Kaur, Jasmine; Poblete, Samantha; Huang, Ruea-Yea; Zhu, Qianqian; Grzesik, Katherine A; Battaglia, Sebastiano; Cannioto, Rikki; Krolewski, John J; Zsiros, Emese; Frederick, Peter J; Lele, Shashikant B; Moysich, Kirsten B; Odunsi, Kunle O

2018-02-01

Given prior evidence that an affected woman conveys a higher risk of ovarian cancer to her sister than to her mother, we hypothesized that there exists an X-linked variant evidenced by transmission to a woman from her paternal grandmother via her father. We ascertained 3,499 grandmother/granddaughter pairs from the Familial Ovarian Cancer Registry at the Roswell Park Cancer Institute observing 892 informative pairs with 157 affected granddaughters. We performed germline X-chromosome exome sequencing on 186 women with ovarian cancer from the registry. The rate of cancers was 28.4% in paternal grandmother/granddaughter pairs and 13.9% in maternal pairs consistent with an X-linked dominant model (Chi-square test X2 = 0.02, p = 0.89) and inconsistent with an autosomal dominant model (X2 = 20.4, p<0.001). Paternal grandmother cases had an earlier age-of-onset versus maternal cases (hazard ratio HR = 1.59, 95%CI: 1.12-2.25) independent of BRCA1/2 status. Reinforcing the X-linked hypothesis, we observed an association between prostate cancer in men and ovarian cancer in his mother and daughters (odds ratio, OR = 2.34, p = 0.034). Unaffected mothers with affected daughters produced significantly more daughters than sons (ratio = 1.96, p<0.005). We performed exome sequencing in reported BRCA negative cases from the registry. Considering age-of-onset, one missense variant (rs176026 in MAGEC3) reached chromosome-wide significance (Hazard ratio HR = 2.85, 95%CI: 1.75-4.65) advancing the age of onset by 6.7 years. In addition to the well-known contribution of BRCA, we demonstrate that a genetic locus on the X-chromosome contributes to ovarian cancer risk. An X-linked pattern of inheritance has implications for genetic risk stratification. Women with an affected paternal grandmother and sisters of affected women are at increased risk for ovarian cancer. Further work is required to validate this variant and to characterize carrier families.

Paternal lineage early onset hereditary ovarian cancers: A Familial Ovarian Cancer Registry study

PubMed Central

Eng, Kevin H.; Szender, J. Brian; Etter, John Lewis; Kaur, Jasmine; Poblete, Samantha; Huang, Ruea-Yea; Zhu, Qianqian; Battaglia, Sebastiano; Cannioto, Rikki; Krolewski, John J.; Zsiros, Emese; Frederick, Peter J.; Lele, Shashikant B.; Moysich, Kirsten B.; Odunsi, Kunle O.

2018-01-01

Given prior evidence that an affected woman conveys a higher risk of ovarian cancer to her sister than to her mother, we hypothesized that there exists an X-linked variant evidenced by transmission to a woman from her paternal grandmother via her father. We ascertained 3,499 grandmother/granddaughter pairs from the Familial Ovarian Cancer Registry at the Roswell Park Cancer Institute observing 892 informative pairs with 157 affected granddaughters. We performed germline X-chromosome exome sequencing on 186 women with ovarian cancer from the registry. The rate of cancers was 28.4% in paternal grandmother/granddaughter pairs and 13.9% in maternal pairs consistent with an X-linked dominant model (Chi-square test X2 = 0.02, p = 0.89) and inconsistent with an autosomal dominant model (X2 = 20.4, p<0.001). Paternal grandmother cases had an earlier age-of-onset versus maternal cases (hazard ratio HR = 1.59, 95%CI: 1.12–2.25) independent of BRCA1/2 status. Reinforcing the X-linked hypothesis, we observed an association between prostate cancer in men and ovarian cancer in his mother and daughters (odds ratio, OR = 2.34, p = 0.034). Unaffected mothers with affected daughters produced significantly more daughters than sons (ratio = 1.96, p<0.005). We performed exome sequencing in reported BRCA negative cases from the registry. Considering age-of-onset, one missense variant (rs176026 in MAGEC3) reached chromosome-wide significance (Hazard ratio HR = 2.85, 95%CI: 1.75–4.65) advancing the age of onset by 6.7 years. In addition to the well-known contribution of BRCA, we demonstrate that a genetic locus on the X-chromosome contributes to ovarian cancer risk. An X-linked pattern of inheritance has implications for genetic risk stratification. Women with an affected paternal grandmother and sisters of affected women are at increased risk for ovarian cancer. Further work is required to validate this variant and to characterize carrier families. PMID:29447163

Substantial underreporting of anastomotic leakage after anterior resection for rectal cancer in the Swedish Colorectal Cancer Registry.

PubMed

Rutegård, Martin; Kverneng Hultberg, Daniel; Angenete, Eva; Lydrup, Marie-Louise

2017-12-01

The causes and effects of anastomotic leakage after anterior resection are difficult to study in small samples and have thus been evaluated using large population-based national registries. To assess the accuracy of such research, registries should be validated continuously. Patients who underwent anterior resection for rectal cancer during 2007-2013 in 15 different hospitals in three healthcare regions in Sweden were included in the study. Registry data and information from patient records were retrieved. Registered anastomotic leakage within 30 postoperative days was evaluated, using all available registry data and using only the main variable anastomotic insufficiency. With the consensus definition of anastomotic leakage developed by the International Study Group on Rectal Cancer as reference, validity measures were calculated. Some 1507 patients were included in the study. The negative and positive predictive values for registered anastomotic leakage were 96 and 88%, respectively, while the κ-value amounted to 0.76. The false-negative rate was 29%, whereas the false-positive rate reached 1.3% (the vast majority consisting of actual leaks, but occurring after postoperative day 30). Using the main variable anastomotic insufficiency only, the false-negative rate rose to 41%. There is considerable underreporting of anastomotic leakage after anterior resection for rectal cancer in the Swedish Colorectal Cancer Registry. It is probable that this causes an underestimation of the true effects of leakage on patient outcomes, and further quality control is needed.

Cancer incidence and mortality in Mongolia - National Registry Data.

PubMed

Sandagdorj, Tuvshingerel; Sanjaajamts, Erdenechimeg; Tudev, Undarmaa; Oyunchimeg, Dondov; Ochir, Chimedsuren; Roder, David

2010-01-01

The National Cancer Registry of Mongolia began as a hospital-based registry in the early 1960s but then evolved to have a population-wide role. The Registry provides the only cancer data available from Mongolia for international comparison. The descriptive data presented in this report are the first to be submitted on cancer incidence in Mongolia to a peer-reviewed journal. The purpose was to describe cancer incidence and mortality for all invasive cancers collectively, individual primary sites, and particularly leading sites, and consider cancer control opportunities. This study includes data on new cancer cases registered in Mongolia in 2003-2007. Incidence and mortality rates were calculated as mean annual numbers per 100,000 residents. Age-standardized incidence (ASR) and age-standardized mortality (ASMR) rates were calculated from age-specific rates by weighting directly to the World Population standard. Between 2003 and 2007, 17,271 new cases of invasive cancer were recorded (52.2% in males, 47.7% in females). The five leading primary sites in males were liver, stomach, lung, esophagus, and colon/rectum; whereas in females they were liver, cervix, stomach, esophagus and breast. ASRs were lower in females than males for cancers of the liver at 63.0 and 99.1 per 100,000 respectively; cancers of the stomach at 19.1 and 42.1 per 100,000 respectively; and cancers of the lung at 8.3 and 33.2 per 100,000 respectively. Liver cancer was the most common cause of death in each gender, the ASMR being lower for females than males at 60.6 compared with 94.8 per 100,000. In females the next most common sites of cancer death were the stomach and esophagus, whereas in males, they were the stomach and lung. Available data indicate that ASRs of all cancers collectively have increased over the last 20 years. Rates are highest for liver cancer, at about four times the world average. The most common cancers are those with a primary site of liver, stomach and esophagus, for which

Utility of an Australasian registry for children undergoing radiation treatment.

PubMed

Ahern, Verity

2014-12-01

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

A Global Cancer Surveillance Framework Within Noncommunicable Disease Surveillance: Making the Case for Population-Based Cancer Registries.

PubMed

Piñeros, Marion; Znaor, Ariana; Mery, Les; Bray, Freddie

2017-01-01

The growing burden of cancer among several major noncommunicable diseases (NCDs) requires national implementation of tailored public health surveillance. For many emerging economies where emphasis has traditionally been placed on the surveillance of communicable diseases, it is critical to understand the specificities of NCD surveillance and, within it, of cancer surveillance. We propose a general framework for cancer surveillance that permits monitoring the core components of cancer control. We examine communalities in approaches to the surveillance of other major NCDs as well as communicable diseases, illustrating key differences in the function, coverage, and reporting in each system. Although risk factor surveys and vital statistics registration are the foundation of surveillance of NCDs, population-based cancer registries play a unique fundamental role specific to cancer surveillance, providing indicators of population-based incidence and survival. With an onus now placed on governments to collect these data as part of the monitoring of NCD targets, the integration of cancer registries into existing and future NCD surveillance strategies is a vital requirement in all countries worldwide. The Global Initiative for Cancer Registry Development, endorsed by the World Health Organization, provides a means to enhance cancer surveillance capacity in low- and middle-income countries. © The Author 2017. Published by Oxford University Press on behalf of the Johns Hopkins Bloomberg School of Public Health. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Long-term survival and conditional survival of cancer patients in Japan using population-based cancer registry data

PubMed Central

Ito, Yuri; Miyashiro, Isao; Ito, Hidemi; Hosono, Satoyo; Chihara, Dai; Nakata-Yamada, Kayo; Nakayama, Masashi; Matsuzaka, Masashi; Hattori, Masakazu; Sugiyama, Hiromi; Oze, Isao; Tanaka, Rina; Nomura, Etsuko; Nishino, Yoshikazu; Matsuda, Tomohiro; Ioka, Akiko; Tsukuma, Hideaki; Nakayama, Tomio

2014-01-01

Although we usually report 5-year cancer survival using population-based cancer registry data, nowadays many cancer patients survive longer and need to be followed-up for more than 5 years. Long-term cancer survival figures are scarce in Japan. Here we report 10-year cancer survival and conditional survival using an established statistical approach. We received data on 1 387 489 cancer cases from six prefectural population-based cancer registries in Japan, diagnosed between 1993 and 2009 and followed-up for at least 5 years. We estimated the 10-year relative survival of patients who were followed-up between 2002 and 2006 using period analysis. Using this 10-year survival, we also calculated the conditional 5-year survival for cancer survivors who lived for some years after diagnosis. We reported 10-year survival and conditional survival of 23 types of cancer for 15–99-year-old patients and four types of cancer for children (0–14 years old) and adolescent and young adults (15–29 years old) patients by sex. Variation in 10-year cancer survival by site was wide, from 5% for pancreatic cancer to 95% for female thyroid cancer. Approximately 70–80% of children and adolescent and young adult cancer patients survived for more than 10 years. Conditional 5-year survival for most cancer sites increased according to years, whereas those for liver cancer and multiple myeloma did not increase. We reported 10-year cancer survival and conditional survival using population-based cancer registries in Japan. It is important for patients and clinicians to report these relevant figures using population-based data. PMID:25183551

[External evaluation of population-based cancer registries: the REDEPICAN Guide for Latin America].

PubMed

Navarro, Carmen; Molina, José Antonio; Barrios, Enrique; Izarzugaza, Isabel; Loria, Dora; Cueva, Patricia; Sánchez, María José; Chirlaque, María Dolores; Fernández, Leticia

2013-11-01

Evaluate the feasibility of the REDEPICAN Guide (Red Iberoamericana de Epidemiología y Sistemas de Información en Cáncer) and its adaptation to the current situation of population-based cancer registries (PBCRs) in Latin America and the Caribbean as a useful tool to improve these registries. Experts in cancer registries and health audits designed the guide and developed seven domains to evaluate in PBCRs. Several criteria were selected for each domain, with corresponding standards, scored according to three levels of compliance. Two training courses for external evaluators and three discussion panels for experts were organized. The guide was tested in six PBCRs in Latin America and Spain. The guide contains 68 criteria, 10 of which are considered essential for a PBCR. Based on its score, a registry is regarded as acceptable (41-199), good (200-299), or excellent (300-350). The registry methods domain accounts for 25% of the score, followed by completeness and validity (19%), dissemination of outcomes (19%), structure (13%), confidentiality and ethical aspects (11%), comparability (9%), and the procedures manual (3%). The pilot project enabled (1) enhancement of criteria and standards, (2) expansion of the quality concept to include client needs, and (3) strengthening the dissemination of outcomes section. Two of the Latin American registries that were evaluated improved their quality, meeting the standards of the International Agency for Research on Cancer. Development of the REDEPICAN Guide has taken into account the context of the registries in Latin America and is a useful and innovative tool for improving the quality of PBCRs. Furthermore, it is ready for use in other countries and registries.

Cancer Incidence in Kerman Province, Southeast of Iran: Report of an ongoing Population-Based Cancer Registry, 2014

PubMed

Shahesmaeili, Armita; Malekpour Afshar, Reza; Sadeghi, Azadeh; Bazrafshan, Azam

2018-06-25

Introduction: The epidemiology of common cancers in Kerman province, southeast of Iran, was assessed based upon results of the Kerman Population-Based Cancer Registry Program (KPBCR). Methods: in this retrospective study, all patients diagnosed with primary cancers and registered with the KPBCR were included. New cancer cases registered from 2014 were identified from pathological labs, medical reports of 48 health facilities providing cancer diagnosis or treatment services and the national death registry program. Data for patients who were referred to neighboring provinces to access health services were also collected from national referral registries. Results from autopsies was additionally extracted from regional forensic and legal medicine centers and added to the registry periodically. Age standardized incidence rates (ASRs) per 100,000 person-years for all cancers were computed, using direct-standardization and CanReg methodology. Mortality to incidence (M:I) ratios and microscopically verified (MV) proportions were calculated as quality measures. Results: A total of 2,838 cases of cancer were registered in Kerman province, 2014. Of these 45. 6% involved women (n=1,293). Individuals aged 60-64 years represented the largest proportion (11.6%) of the total cancer prevalence, followed by those aged 55-59 years (10.86%) and 65-69 years (8.99%). The ASRs for all cancers were 155.1 and 118.90 per 100,000, in men and women, respectively. In women, breast (ASR: 26.4), skin (ASR: 13.0), thyroid (ASR: 9.2), leukemia (ASR: 8.0) and colorectal (ASR: 7.70) were the most common cancers. In men, bladder (ASR: 24.70), skin (ASR: 16.80), lung (ASR: 14.6), leukemia (ASR: 14.50), and stomach (ASR: 10.8) were found to be the most frequent. Conclusion: This study provided latest evidence on epidemiology of cancer in the southeast of Iran that could be used to empower prevention and control interventions in a developing country. Creative Commons Attribution License

[Record linkage of a large clinical practice patient cohort with the Cancer Registry Schleswig-Holstein].

PubMed

Obi, N; Waldmann, A; Babaev, V; Katalinic, A

2011-07-01

A precondition for the evaluation of outcomes in cohort studies and screening programmes is the availability of follow-up data. In Germany, established cancer registries provide such data for incident primary cancer diseases and mortality. To utilise these cancer registry data a person's identifying code has to be correctly linked to study or programme records, a procedure which, up to date, has been only rarely used in Germany. Exemplarily, the feasibility and validity of record linkage of a cohort of 173 050 patients from the Quality-assured Mamma Diagnostic programme (QuaMaDi) to the cancer registry Schleswig-Holstein was assessed by the accuracy of the classified outcome. Name, date of birth and address of the QuaMaDi cohort members were coded in the confidential administration center of the registry. These codes were passed by the codes of 129 455 female cancer registry records. Datasets were synchronised for each match, so that QuaMaDi participants could be identified in the registry file. In a next step epidemiological registry records were linked to the QuaMaDi study records. The accuracy of classifying outcome was assessed by agreement measures, i. e., Cohen's kappa. In cases of disagreement, a questionnaire has been sent to QuaMaDi patients' gynaecologists to validate the final diagnosis. Synchronisation of both cohorts resulted in 18 689 one to one matches with any kind of malignant tumour, therein 8 449 breast cancers (ICD-10 C50, D05). Absolute agreement between files according to diagnosed or suspected breast cancer was 97.6% with a kappa value of 0.79. When suspicious BIRADS 4 cases from QuaMaDi were excluded, agreement and kappa rose to 99.5% and 0.948, respectively. After correction of the final diagnosis according to the physician's responses, agreement measures slightly improved in both groups of ascertained diagnosis including and excluding the suspected cases. Within QuaMaDi the diagnosed breast cancer cases were predominantly

Cancer Registries and Monitoring the Impact of Prophylactic Human Papillomavirus Vaccines: The Potential Role

PubMed Central

Saraiya, Mona; Goodman, Marc T.; Datta, S. Deblina; Chen, Vivien W.; Wingo, Phyllis A.

2009-01-01

The recent US Food and Drug Administration licensure of a prophylactic vaccine against oncogenic human papillomavirus (HPV) types 16 and 18, the first of its kind, poses unique challenges in postmarketing vaccine surveillance, especially in measuring vaccine effectiveness against biologic endpoints of HPV infection. Historically, the national system of population-based cancer registries in the US has provided high-quality data on cancer incidence and mortality for the most important biologic endpoints, namely, anogenital cancers and some oral cavity/oropharyngeal cancers. There also has been some data collection on cancer precursors; however, this activity has been inconsistent and of lower priority. Because effectiveness against HPV-associated cancers will not be measurable for several decades, strengthening and possibly expanding the capacity of registries to collect precancer data, which are earlier manifestations of infection, must be considered. Collecting type-specific data on HPV-associated precancers and cancers. While keeping in mind the current limitations of registry operations, they discuss resources that may be needed to implement and sustain these types of activities. PMID:18980287

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. Copyright © 2014 Elsevier Masson SAS. All rights reserved.

A breast cancer clinical registry in an Italian comprehensive cancer center: an instrument for descriptive, clinical, and experimental research.

PubMed

Baili, Paolo; Torresani, Michele; Agresti, Roberto; Rosito, Giuseppe; Daidone, Maria Grazia; Veneroni, Silvia; Cavallo, Ilaria; Funaro, Francesco; Giunco, Marco; Turco, Alberto; Amash, Hade; Scavo, Antonio; Minicozzi, Pamela; Bella, Francesca; Meneghini, Elisabetta; Sant, Milena

2015-01-01

In clinical research, many potentially useful variables are available via the routine activity of cancer center-based clinical registries (CCCR). We present the experience of the breast cancer clinical registry at Fondazione IRCCS "Istituto Nazionale dei Tumori" to give an example of how a CCCR can be planned, implemented, and used. Five criteria were taken into consideration while planning our CCCR: (a) available clinical and administrative databases ought to be exploited to the maximum extent; (b) open source software should be used; (c) a Web-based interface must be designed; (d) CCCR data must be compatible with population-based cancer registry data; (e) CCCR must be an open system, able to be connected with other data repositories. The amount of work needed for the implementation of a CCCR is inversely linked with the amount of available coded data: the fewer data are available in the input databases as coded variables, the more work will be necessary, for information technology staff, text mining analysis, and registrars (for collecting data from clinical records). A cancer registry in a comprehensive cancer center can be used for several research aspects, such as estimate of the number of cases needed for clinical studies, assessment of biobank specimens with specific characteristics, evaluation of clinical practice and adhesion to clinical guidelines, comparative studies between clinical and population sets of patients, studies on cancer prognosis, and studies on cancer survivorship.

Completeness of T, N, M and stage grouping for all cancers in the Mallorca Cancer Registry.

PubMed

Ramos, M; Franch, P; Zaforteza, M; Artero, J; Durán, M

2015-11-04

TNM staging of cancer is used to establish the treatment and prognosis for cancer patients, and also allows the assessment of screening programmes and hospital performance. Collection of staging data is becoming a cornerstone for cancer registries. The objective of the study was to assess the completeness of T, N, M and stage grouping registration for all cancers in the Mallorca Cancer Registry in 2006-2008 and to explore differences in T, N, M and stage grouping completeness by site, gender, age and type of hospital. All invasive cancer cases during the period 2006-2008 were selected. DCO, as well as children's cancers, CNS, unknown primary tumours and some haematological cases were excluded. T, N, M and stage grouping were collected separately and followed UICC (International Union Against Cancer) 7th edition guidelines. For T and N, we registered whether they were pathological or clinical. Ten thousand two hundred fifty-seven cases were registered. After exclusions, the study was performed with 9283 cases; 39.4 % of whom were women and 60.6 % were men. T was obtained in 48.6 % cases, N in 36.5 %, M in 40 % and stage in 37.9 %. T and N were pathological in 71 % of cases. Stage completeness exceeded 50 % in lung, colon, ovary and oesophagus, although T also exceeded 50 % at other sites, including rectum, larynx, colon, breast, bladder and melanoma. No differences were found in TNM or stage completeness by gender. Completeness was lower in younger and older patients, and in cases diagnosed in private clinics. T, N, M and stage grouping data collection in population-based cancer registries is feasible and desirable.

Establishment of the Fox Chase Network Breast Cancer Risk Registry

DTIC Science & Technology

1996-10-01

Neurofibromatosis, type I h) Non-insulin dependent diabetes i) Turner Syndrome j) Tay Sachs Disease k) Marfan Syndrome 1) Cancer (tricky!) 2. Human chromosomes are...gastrointestinal and genitourinary cancers (4). Altogether, over 12 genetic-cancer syndromes have been localized to a specific gene (5). Some families suffer...component of the rare help test the best ways to Risk Registry._5, cases of breast cancer tions are likely to result Li-Fraumeni syndrome , only and up to

Establishing the Aus-ROC Australian and New Zealand out-of-hospital cardiac arrest Epistry

PubMed Central

Bray, Janet; Smith, Karen; Walker, Tony; Grantham, Hugh; Hein, Cindy; Thorrowgood, Melanie; Smith, Anthony; Smith, Tony; Dicker, Bridget; Swain, Andy; Bailey, Mark; Bosley, Emma; Pemberton, Katherine; Cameron, Peter; Nichol, Graham; Finn, Judith

2016-01-01

Introduction Out-of-hospital cardiac arrest (OHCA) is a global health problem with low survival. Regional variation in survival has heightened interest in combining cardiac arrest registries to understand and improve OHCA outcomes. While individual OHCA registries exist in Australian and New Zealand ambulance services, until recently these registries have not been combined. The aim of this protocol paper is to describe the rationale and methods of the Australian Resuscitation Outcomes Consortium (Aus-ROC) OHCA epidemiological registry (Epistry). Methods and analysis The Aus-ROC Epistry is designed as a population-based cohort study. Data collection started in 2014. Six ambulance services in Australia (Ambulance Victoria, SA Ambulance Service, St John Ambulance Western Australia and Queensland Ambulance Service) and New Zealand (St John New Zealand and Wellington Free Ambulance) currently contribute data. All OHCA attended by ambulance, regardless of aetiology or patient age, are included in the Epistry. The catchment population is approximately 19.3 million persons, representing 63% of the Australian population and 100% of the New Zealand population. Data are collected using Utstein-style definitions. Information incorporated into the Epistry includes demographics, arrest features, ambulance response times, treatment and patient outcomes. The primary outcome is ‘survival to hospital discharge’, with ‘return of spontaneous circulation’ as a key secondary outcome. Ethics and dissemination Ethics approval was independently sought by each of the contributing registries. Overarching ethics for the Epistry was provided by Monash University HREC (Approval No. CF12/3938—2012001888). A population-based OHCA registry capturing the majority of Australia and New Zealand will allow risk-adjusted outcomes to be determined, to enable benchmarking across ambulance providers, facilitate the identification of system-wide strategies associated with survival from OHCA, and

A basis for translational cancer research on aetiology, pathogenesis and prognosis: Guideline for standardised and population-based linkages of biobanks to cancer registries.

PubMed

Dillner, Joakim

2015-06-01

Population-based cancer research is paramount for controlling cancer. Cancer research is increasingly dependent on access to biospecimens from subjects that have been followed-up for future health outcomes. This is achieved using longitudinal follow-up of cohorts and biobanks using cancer registry linkages. All over the world, more and more large population-based cohorts and advanced biobanking facilities are established. International standardisation and networking in the linkage of cohorts and biobanks to cancer registries is required in order to enable international cancer research and comparability of research results. An international operating procedure and standard minimum dataset for linkages of biobanks, cohorts and cancer registries is proposed. An internationally comparable provision of well characterised study bases for molecular cancer research will be an essential prerequisite for the success of translational medicine. Copyright © 2013 Elsevier Ltd. All rights reserved.

Prediagnostic alcohol consumption and colorectal cancer survival: The Colon Cancer Family Registry.

PubMed

Phipps, Amanda I; Robinson, Jamaica R; Campbell, Peter T; Win, Aung Ko; Figueiredo, Jane C; Lindor, Noralane M; Newcomb, Polly A

2017-05-15

Although previous studies have noted an increased risk of colorectal cancer (CRC) among moderate to heavy alcohol consumers in comparison with nondrinkers, the relation between alcohol consumption and CRC survival remains unclear. Cases of incident invasive CRC diagnosed between 1997 and 2007 were identified via population-based cancer registries at 4 study sites in the Colon Cancer Family Registry. Study participants completed a risk-factor questionnaire on prediagnostic behaviors, including wine, beer, and liquor consumption, at the baseline. Prospective follow-up for survival was conducted for 4966 CRC cases. Cox regression was used to compare nondrinkers with individuals who consumed, on average, 1 or more servings of alcohol per day in the years preceding their CRC diagnosis with respect to overall and disease-specific survival. Separate analyses by beverage type, stratified by patient and tumor attributes, were also performed. All models were adjusted for the age at diagnosis, sex, study site, year of diagnosis, smoking history, body mass index, and education. Prediagnostic beer and liquor consumption was not associated with CRC survival; however, higher levels of wine consumption were modestly associated with a better prognosis overall (CRC-specific hazard ratio [HR], 0.70, 95% confidence interval [CI], 0.48-1.03; overall HR, 0.70; 95% CI, 0.53-0.94). Similar patterns were noted in stratified analyses. These findings suggest that prediagnostic wine consumption is modestly associated with more favorable survival after CRC. Cancer 2017;123:1035-43. © 2016 American Cancer Society. © 2016 American Cancer Society.

The Victorian Lung Cancer Registry pilot: improving the quality of lung cancer care through the use of a disease quality registry.

PubMed

Stirling, Rob G; Evans, S M; McLaughlin, P; Senthuren, M; Millar, J; Gooi, J; Irving, L; Mitchell, P; Haydon, A; Ruben, J; Conron, M; Leong, T; Watkins, N; McNeil, J J

2014-10-01

Lung cancer remains a major disease burden in Victoria (Australia) and requires a complex and multidisciplinary approach to ensure optimal care and outcomes. To date, no uniform mechanism is available to capture standardized population-based outcomes and thereby provide benchmarking. The establishment of such a data platform is, therefore, a primary requisite to enable description of process and outcome in lung cancer care and to drive improvement in the quality of care provided to individuals with lung cancer. A disease quality registry pilot has been established to capture prospective data on all adult patients with clinical or tissue diagnoses of small cell and non-small cell lung cancer. Steering and management committees provide clinical governance and supervise quality indicator selection. Quality indicators were selected following extensive literature review and evaluation of established clinical practice guidelines. A minimum dataset has been established and training and data capture by data collectors is facilitated using a web-based portal. Case ascertainment is established by regular institutional reporting of ICD-10 discharge coding. Recruitment is optimized by provision of opt-out consent. The collection of a standardized minimum data set optimizes capacity for harmonized population-based data capture. Data collection has commenced in a variety of settings reflecting metropolitan and rural, and public, and private health care institutions. The data set provides scope for the construction of a risk-adjusted model for outcomes. A data access policy and a mechanism for escalation policy for outcome outliers has been established. The Victorian Lung Cancer Registry provides a unique capacity to provide and confirm quality assessment in lung cancer and to drive improvement in quality of care across multidisciplinary stakeholders.

Metadata registry and management system based on ISO 11179 for cancer clinical trials information system

PubMed Central

Park, Yu Rang; Kim*, Ju Han

2006-01-01

Standardized management of data elements (DEs) for Case Report Form (CRF) is crucial in Clinical Trials Information System (CTIS). Traditional CTISs utilize organization-specific definitions and storage methods for Des and CRFs. We developed metadata-based DE management system for clinical trials, Clinical and Histopathological Metadata Registry (CHMR), using international standard for metadata registry (ISO 11179) for the management of cancer clinical trials information. CHMR was evaluated in cancer clinical trials with 1625 DEs extracted from the College of American Pathologists Cancer Protocols for 20 major cancers. PMID:17238675

Hereditary association between testicular cancer and familial ovarian cancer: A Familial Ovarian Cancer Registry study.

PubMed

Etter, John Lewis; Eng, Kevin; Cannioto, Rikki; Kaur, Jasmine; Almohanna, Hani; Alqassim, Emad; Szender, J Brian; Joseph, Janine M; Lele, Shashikant; Odunsi, Kunle; Moysich, Kirsten B

2018-04-01

Although family history of testicular cancer is well-established as a risk factor for testicular cancer, it is unknown whether family history of ovarian cancer is associated with risk of testicular cancer. Using data from the Familial Ovarian Cancer Registry on 2636 families with multiple cases of ovarian cancer, we systematically compared relative frequencies of ovarian cancer among relatives of men with testicular and non-testicular cancers. Thirty-one families with cases of both ovarian and testicular cancer were identified. We observed that, among men with cancer, those with testicular cancer were more likely to have a mother with ovarian cancer than those with non-testicular cancers (OR = 3.32, p = 0.004). Zero paternal grandmothers of men with testicular cancer had ovarian cancer. These observations provide compelling preliminary evidence for a familial association between ovarian and testicular cancers Future studies should be designed to further investigate this association and evaluate X-linkage. Copyright © 2018 Elsevier Ltd. All rights reserved.

Long term outcomes data for the Burns Registry of Australia and New Zealand: Is it feasible?

PubMed

Gabbe, Belinda J; Cleland, Heather; Watterson, Dina M; Schrale, Rebecca; McRae, Sally; Parker, Christine; Taggart, Susan; Edgar, Dale W

2015-12-01

Incorporating routine and standardised collection of long term outcomes following burn into burn registries would improve the capacity to quantify burn burden and evaluate care. To evaluate methods for collecting the long term functional and quality of life outcomes of burns patients and establish the feasibility of implementing these outcomes into a multi-centre burns registry. Five Burns Registry of Australia and New Zealand (BRANZ) centres participated in this prospective, longitudinal study. Patients admitted to the centres between November 2009 and November 2010 were followed-up at 1, 6, 12 and 24-months after injury using measures of burn specific health, health status, fatigue, itch and return to work. Participants in the study were compared to BRANZ registered patients at the centres over the study timeframe to identify participation bias, predictors of successful follow-up were established using a Generalised Estimating Equation model, and the completion rates by mode of administration were assessed. 463 patients participated in the study, representing 24% of all BRANZ admissions in the same timeframe. Compared to all BRANZ patients in the same timeframe, the median %TBSA and hospital length of stay was greater in the study participants. The follow-up rates were 63% at 1-month, 47% at 6-months; 40% at 12-months, and 21% at 24-months after injury, and there was marked variation in follow-up rates between the centres. Increasing age, greater %TBSA and opt-in centres were associated with greater follow-up. Centres which predominantly used one mode of administration experienced better follow-up rates. The low participation rates, high loss to follow-up and responder bias observed indicate that greater consideration needs to be given to alternative models for follow-up, including tailoring the follow-up protocol to burn severity or type. Copyright © 2015 Elsevier Ltd and ISBI. All rights reserved.

Chinese peoples' perceptions of colorectal cancer screening: a New Zealand perspective.

PubMed

Bong, Genevieve; McCool, Judith

2011-03-25

A national cancer screening programme requires a level of perceived acceptability of the procedure among the target population groups to be successful (that is, achieve a high uptake rate). In this study we explored Chinese immigrants' attitudes and perceptions towards colorectal cancer screening. A grounded theory methodology was used explore the determinants of colorectal cancer screening. In depth one-on-one interviews were conducted and subsequently analysed to develop an appreciation of the perspectives on colorectal cancer screening among Chinese people living in New Zealand. Findings indicated a high degree of perceived acceptability for the concept of a national colorectal cancer screening programme. Chinese participants valued health care and preventive health measures were highly prioritised. However, colorectal cancer suffered from the 'poor cousin' syndrome whereby other more highly publicised cancers, such breast cancer, or skin cancer, were perceived to be more relevant and serious, thus marginalising the perceived priority of colorectal cancer screening. Overall, participants paid close attention to their bodies' balance and were proactive in seeking medical advice. Patient practitioner interaction was also found to be influential in the patient's decision to seek screening. The results of the study suggest that the introduction of a colorectal cancer screening programme in New Zealand would benefit from close attention to cultural determinants of screening uptake to provide an equitable service and outcome. Chinese patients who are eligible for participating in the colorectal cancer screening would benefit from access to appropriately detailed and culturally relevant information on the risks, benefit and procedures associated with colorectal cancer screening.

[The cancer registry is fundamental for the treatment, prevention and control of childhood cancer].

PubMed

González-Miranda, Guadalupe; Fajardo-Gutiérrez, Arturo

2011-01-01

During the last 10 years cancer in the Mexican pediatric population is growing. It is the second leading cause of death (children 1 to 14 years of age). The first step in controlling these diseases by registering the cases. Cancer Registry (CR) is fundamental for gaining knowledge that can be used for planning medical treatment and future research into causal factors and for the prevention. A CR is an information system designed to collect and encode data concerning individuals with cancer, and then to disseminate the compiled epidemiological results to various groups of stakeholders. Data are obtained from a hospital or group of hospitals, with special emphasis being placed on the quality of the data (completeness, validity and timeliness data). It is necessary a group of highly trained individuals called registrars, who are experts in the collection, encoding, and dissemination of internal reports to researchers and medical personnel. There are two main types of registries: those that are hospital based and those that are population based. The categories of data that should be collected are demographic data of the patient; descriptors of the cancer; details of the treatment administered; and details of the outcome of the treatment. It must be emphasized that all data conceming patients with cancer should be held in the strictest confidence.

Reduced risk of colorectal cancer among recent generations in New Zealand.

PubMed Central

Cox, B.; Little, J.

1992-01-01

Male and female age standardised mortality and incidence rates of colorectal cancer have increased over the most recent 30 years in New Zealand. Among men and women aged 40 to 74, age standardised mortality and incidence rates increased 18 to 105%. However, age standardised mortality and incidence rates among younger men and women have declined from 14 to 69%. Analysis of trends in age specific mortality and incidence rates indicates that the occurrence of colorectal cancer has been declining equally for men and women in successive cohorts born about 1943 to 1953 in New Zealand. This decline in the frequency of colorectal cancer among recent generations was apparent for both the right and left sides of the colon and the rectum. Age-specific trends in coronary heart disease and breast cancer differed from those apparent for colorectal cancer, suggesting that the factors producing the reduction in colorectal cancer risk may affect these diseases among different age groups or may not be of major aetiological importance in these diseases. These trends provide empirical evidence that the occurrence of colorectal cancer can be reduced by at least 50% with a substantial component of the risk being determined before the age of 30. Further study is needed to establish whether changes in risk factors at older ages contribute to the prevention of the disease. PMID:1503913

Muddy Water? Variation in Reporting Receipt of Breast Cancer Radiation Therapy by Population-Based Tumor Registries

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

Walker, Gary V.; Giordano, Sharon H.; Williams, Melanie

2013-07-15

Purpose: To evaluate, in the setting of breast cancer, the accuracy of registry radiation therapy (RT) coding compared with the gold standard of Medicare claims. Methods and Materials: Using Surveillance, Epidemiology, and End Results (SEER)–Medicare data, we identified 73,077 patients aged ≥66 years diagnosed with breast cancer in the period 2001-2007. Underascertainment (1 - sensitivity), sensitivity, specificity, κ, and χ{sup 2} were calculated for RT receipt determined by registry data versus claims. Multivariate logistic regression characterized patient, treatment, and geographic factors associated with underascertainment of RT. Findings in the SEER–Medicare registries were compared with three non-SEER registries (Florida, New York,more » and Texas). Results: In the SEER–Medicare registries, 41.6% (n=30,386) of patients received RT according to registry coding, versus 49.3% (n=36,047) according to Medicare claims (P<.001). Underascertainment of RT was more likely if patients resided in a newer SEER registry (odds ratio [OR] 1.70, 95% confidence interval [CI] 1.60-1.80; P<.001), rural county (OR 1.34, 95% CI 1.21-1.48; P<.001), or if RT was delayed (OR 1.006/day, 95% CI 1.006-1.007; P<.001). Underascertainment of RT receipt in SEER registries was 18.7% (95% CI 18.6-18.8%), compared with 44.3% (95% CI 44.0-44.5%) in non-SEER registries. Conclusions: Population-based tumor registries are highly variable in ascertainment of RT receipt and should be augmented with other data sources when evaluating quality of breast cancer care. Future work should identify opportunities for the radiation oncology community to partner with registries to improve accuracy of treatment data.« less

Health data research in New Zealand: updating the ethical governance framework.

PubMed

Ballantyne, Angela; Style, Rochelle

2017-10-27

Demand for health data for secondary research is increasing, both in New Zealand and worldwide. The New Zealand government has established a large research database, the Integrated Data Infrastructure (IDI), which facilitates research, and an independent ministerial advisory group, the Data Futures Partnership (DFP), to engage with citizens, the private sector and non-government organisations (NGOs) to facilitate trusted data use and strengthen the data ecosystem in New Zealand. We commend these steps but argue that key strategies for effective health-data governance remain absent in New Zealand. In particular, we argue in favour of the establishment of: (1) a specialist Health and Disability Ethics Committee (HDEC) to review applications for secondary-use data research; (2) a public registry of approved secondary-use research projects (similar to a clinical trials registry); and (3) detailed guidelines for the review and approval of secondary-use data research. We present an ethical framework based on the values of public interest, trust and transparency to justify these innovations.

Feasibility of evaluating quality cancer care using registry data and electronic health records: a population-based study.

PubMed

Caldarella, Adele; Amunni, Gianni; Angiolini, Catia; Crocetti, Emanuele; Di Costanzo, Francesco; Di Leo, Angelo; Giusti, Francesco; Pegna, Andrea Lopes; Mantellini, Paola; Luzzatto, Lucio; Paci, Eugenio

2012-08-01

To evaluate the quality of patients care, a set of indicators of the standards of cancer care were defined. We developed a set of indicators to assess the implementation in daily practice of recommendation produced by a regional network (Istituto Toscano Tumori). This set was tested in a retrospective study in the resident population of the Tuscany Region; the regional health system is organized on 12 local health authorities which refer to three macro areas (Area Vasta). The study included incident colorectal, lung and breast cancer cases listed in 2004 for the Tuscan Cancer Registry, a population-based registry which collected tumor cases diagnosed in all residents in Tuscany. Electronic data from registry database were used to determine the compliance with each indicator for patients in 2004. To validate the results, an ad hoc clinical survey including the same geographical area for the year 2006 was performed. None. The proportion of patients who fulfilled each of the indicators. Our study showed the feasibility of the evaluation of the quality of cancer care using cancer registry population-based data and major computerized information systems. The estimation of the selected indicators confirmed a good homogeneity among areas, and globally revealed a good intraregional performance. Further work is needed to develop specific quality measures, particularly about structural data and to continually revise indicators of quality of care. Data from a cancer registry, however, can be useful to evaluate quality of cancer care.

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

PubMed

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

2018-06-18

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

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. Published by Elsevier Inc.

Beyond PSA: are new prostate cancer biomarkers of potential value to New Zealand doctors?

PubMed

Ng, Lance; Karunasinghe, Nishi; Benjamin, Challaraj S; Ferguson, Lynnette R

2012-04-20

The widespread introduction of prostate-specific antigen (PSA) screening has enhanced the early detection of prostate cancer within New Zealand. However, uncertainties associated with the test make it difficult to confidently differentiate low-risk patients from those that require a definitive diagnostic biopsy. In consequence, the decisions surrounding prostate cancer treatment become extremely difficult. A number of new tests have become available which might have the potential to complement the current PSA screens. We review a number of the best validated of these which provide data that, although currently not available in clinical practice, some of these might have considerable potential to aid diagnosis, prognosis and therapeutic decisions for men with prostate cancer in New Zealand.

The risk of cancer in recipients of living-donor, standard and expanded criteria deceased donor kidney transplants: a registry analysis.

PubMed

Ma, Maggie K M; Lim, Wai H; Turner, Robin M; Chapman, Jeremy R; Craig, Jonathan C; Wong, Germaine

2014-12-27

Kidneys from expanded criteria deceased donors may elicit a strong inflammatory response, predisposing recipients to an increased risk of cancer after transplantation. We aimed to determine the association between donor types and cancer risk after kidney transplantation. Using the Australian and New Zealand Dialysis and Transplant Registry, we assessed the association between different donor types (living donor, standard, and expanded criteria deceased donors) and the risk of cancer after kidney transplantation using adjusted Cox proportional hazard and competing risk models. Over a median follow-up period of 4.4 years in 7,040 patients (34,684 patient-years), 468 patients (6.6%) developed cancer. The overall risks for cancer were 1,080, 1,444, and 2,018 per 100,000 patient-years for recipients of living donor, standard, and expanded criteria deceased donor kidneys, respectively. Compared to recipients of living-donor kidneys, recipients of expanded criteria deceased donor kidneys were at an increased risk of cancer (adjusted hazard ratio [HR], 1.52; 95% confidence interval [95% CI], 1.15-2.02; P = 0.004), particularly for genitourinary cancer (adjusted HR, 1.79; 95% CI, 1.03-3.10; P = 0.038) and post-transplant lymphoproliferative disease (adjusted HR, 2.72; 95% CI, 1.38-5.37; P = 0.004). Recipients of expanded criteria deceased donor kidneys are at substantially increased risk of cancer, especially cancers with a viral etiology. Allocation of expanded criteria deceased donor kidneys to potential recipients should balance the harms, such as the excess risk of cancer against the survival gains and quality-of-life benefits associated with transplantation.

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.

EACVI/HFA Cardiac Oncology Toxicity Registry in breast cancer patients: rationale, study design, and methodology (EACVI/HFA COT Registry)--EURObservational Research Program of the European Society of Cardiology.

PubMed

Lancellotti, Patrizio; Anker, Stefan D; Donal, Erwan; Edvardsen, Thor; Popescu, Bogdan A; Farmakis, Dimitrios; Filippatos, Gerasimos; Habib, Gilbert; Maggioni, Aldo P; Jerusalem, Guy; Galderisi, Maurizio

2015-05-01

The goal of adjuvant anti-cancer therapies is cure with limited or no side effects, in particular long-term side effects with negative impact on quality of life. In the palliative setting disease control, quality of life and overall survival are important end points. Partly due to improvements in treatment, the population of cancer survivors is large and growing. However, anti-cancer drug-related cardiotoxicity (ADRC) is the leading cause of treatment-associated mortality in cancer survivors. It is one of the most common post-treatment problems among 5- to 10-year survivors of adult cancer. This is particularly true for breast cancer, the most common cancer in women. The EACVI/HFA COT registry is designed for comprehensive data collection and evaluation of the current European practice in terms of diagnosis and management of ADRC in breast cancer patients. The COT registry will be carried out in two continuing phases, the pilot study phase involving 13 countries followed by the long-term registry in which all the 56 ESC countries will be invited to participate. With the COT registry, several critical information will be obtained: on predisposing factors for the development of ADRC, the rate of subclinical LV dysfunction and its transition to overt heart failure, the clinical impact and outcome of ADRC. Published on behalf of the European Society of Cardiology. All rights reserved. © The Author 2015. For permissions please email: journals.permissions@oup.com.

Evidence of prostate cancer "reverse stage migration" toward more advanced disease at diagnosis: Data from the Pennsylvania Cancer Registry.

PubMed

Reese, Adam C; Wessel, Sean R; Fisher, Susan G; Mydlo, Jack H

2016-08-01

The widespread adoption of prostate-specific antigen-based prostate cancer screening caused a stage migration toward earlier stage disease at diagnosis. We investigated whether this stage migration has persisted in a contemporary analysis of a population-based statewide cancer registry. We analyzed the Pennsylvania Cancer Registry, a statewide registry of all newly diagnosed cancers. Data were collected on prostate cancers diagnosed between 1992 and 2012. We determined age-adjusted prostate cancer incidence and mortality rates, as well as the distribution of tumor stage (localized, regional, or metastatic) at diagnosis, and assessed for changes in these variables over time using joinpoint analysis. Between 1992 and 2012, 210,831 new cases of prostate cancer were diagnosed in Pennsylvania, and 33,948 men died of disease. Age-adjusted prostate cancer incidence rates, and specifically the incidence of localized disease, have decreased dramatically since 2007 to 2008. Due to the decreased diagnosis of localized disease, regional and metastatic tumors have made up a greater percentage of all prostate cancer diagnoses in recent years, despite a relatively stable incidence of these advanced stage tumors. Over the past 2 decades, age-adjusted prostate cancer incidence rates in Pennsylvania have decreased, primarily because of the decreased detection of early-stage disease. There has been a corresponding shift toward more advanced disease at diagnosis. These findings may be explained by the decreased use of prostate-specific antigen-based screening, among other factors. The 2012 United States Preventative Services Task Force recommendations against prostate cancer screening may exacerbate this concerning trend, potentially resulting in an increase in prostate cancer-specific mortality. Copyright © 2016 Elsevier Inc. All rights reserved.

Ketamine use for rapid sequence intubation in Australian and New Zealand emergency departments from 2010 to 2015: A registry study.

PubMed

Ferguson, Ian; Alkhouri, Hatem; Fogg, Toby; Aneman, Anders

2018-06-11

This study aimed to quantify the proportion of patients undergoing rapid sequence intubation using ketamine in Australian and New Zealand EDs between 2010 and 2015. The Australian and New Zealand Emergency Department Airway Registry is a multicentre airway registry prospectively capturing data from 43 sites. Data on demographics and physiology, the attending staff and indication for intubation were recorded. The primary outcome was the annual percentage of patients intubated with ketamine. A logistic regression analysis was conducted to evaluate the factors associated with ketamine use. A total of 4658 patients met inclusion criteria. The annual incidence of ketamine use increased from 5% to 28% over the study period (P < 0.0001). In the logistic regression analysis, the presence of an emergency physician as a team leader was the strongest predictor of ketamine use (odds ratio [OR] 1.83, 95% confidence interval [CI] 1.44-2.34). The OR for an increase in one point on the Glasgow Coma Scale was 1.10 (95% CI 1.07-1.12), whereas an increase of 1 mmHg of systolic blood pressure had an OR of 0.98 (95% CI 0.98-0.99). Intubation occurring in a major referral hospital had an OR of 0.68 (95% CI 0.56-0.82), while trauma conferred an OR of 1.38 (95% CI 1.25-1.53). Ketamine use increased between 2010 and 2015. Lower systolic blood pressure, the presence of an emergency medicine team leader, trauma and a higher Glasgow Coma Scale were associated with increased odds of ketamine use. Intubation occurring in a major referral centre was associated with lower odds of ketamine use. © 2018 Australasian College for Emergency Medicine and Australasian Society for Emergency Medicine.

International incidence of childhood cancer, 2001-10: a population-based registry study.

PubMed

Steliarova-Foucher, Eva; Colombet, Murielle; Ries, Lynn A G; Moreno, Florencia; Dolya, Anastasia; Bray, Freddie; Hesseling, Peter; Shin, Hee Young; Stiller, Charles A

2017-06-01

Cancer is a major cause of death in children worldwide, and the recorded incidence tends to increase with time. Internationally comparable data on childhood cancer incidence in the past two decades are scarce. This study aimed to provide internationally comparable local data on the incidence of childhood cancer to promote research of causes and implementation of childhood cancer control. This population-based registry study, devised by the International Agency for Research on Cancer in collaboration with the International Association of Cancer Registries, collected data on all malignancies and non-malignant neoplasms of the CNS diagnosed before age 20 years in populations covered by high-quality cancer registries with complete data for 2001-10. Incidence rates per million person-years for the 0-14 years and 0-19 years age groups were age-adjusted using the world standard population to provide age-standardised incidence rates (WSRs), using the age-specific incidence rates (ASR) for individual age groups (0-4 years, 5-9 years, 10-14 years, and 15-19 years). All rates were reported for 19 geographical areas or ethnicities by sex, age group, and cancer type. The regional WSRs for children aged 0-14 years were compared with comparable data obtained in the 1980s. Of 532 invited cancer registries, 153 registries from 62 countries, departments, and territories met quality standards, and contributed data for the entire decade of 2001-10. 385 509 incident cases in children aged 0-19 years occurring in 2·64 billion person-years were included. The overall WSR was 140·6 per million person-years in children aged 0-14 years (based on 284 649 cases), and the most common cancers were leukaemia (WSR 46·4), followed by CNS tumours (WSR 28·2), and lymphomas (WSR 15·2). In children aged 15-19 years (based on 100 860 cases), the ASR was 185·3 per million person-years, the most common being lymphomas (ASR 41·8) and the group of epithelial tumours and melanoma (ASR 39·5

Tissues from population-based cancer registries: a novel approach to increasing research potential.

PubMed

Goodman, Marc T; Hernandez, Brenda Y; Hewitt, Stephen; Lynch, Charles F; Coté, Timothy R; Frierson, Henry F; Moskaluk, Christopher A; Killeen, Jeffrey L; Cozen, Wendy; Key, Charles R; Clegg, Limin; Reichman, Marsha; Hankey, Benjamin F; Edwards, Brenda

2005-07-01

Population-based cancer registries, such as those included in the Surveillance, Epidemiology, and End-Results (SEER) Program, offer tremendous research potential beyond traditional surveillance activities. We describe the expansion of SEER registries to gather formalin-fixed, paraffin-embedded tissue from cancer patients on a population basis. Population-based tissue banks have the advantage of providing an unbiased sampling frame for evaluating the public health impact of genes or protein targets that may be used for therapeutic or diagnostic purposes in defined communities. Such repositories provide a unique resource for testing new molecular classification schemes for cancer, validating new biologic markers of malignancy, prognosis and progression, assessing therapeutic targets, and measuring allele frequencies of cancer-associated genetic polymorphisms or germline mutations in representative samples. The assembly of tissue microarrays will allow for the use of rapid, large-scale protein-expression profiling of tumor samples while limiting depletion of this valuable resource. Access to biologic specimens through SEER registries will provide researchers with demographic, clinical, and risk factor information on cancer patients with assured data quality and completeness. Clinical outcome data, such as disease-free survival, can be correlated with previously validated prognostic markers. Furthermore, the anonymity of the study subject can be protected through rigorous standards of confidentiality. SEER-based tissue resources represent a step forward in true, population-based tissue repositories of tumors from US patients and may serve as a foundation for molecular epidemiology studies of cancer in this country.

Thyroid Cancer and Tumor Collaborative Registry (TCCR)

PubMed Central

Shats, Oleg; Goldner, Whitney; Feng, Jianmin; Sherman, Alexander; Smith, Russell B.; Sherman, Simon

2016-01-01

A multicenter, web-based Thyroid Cancer and Tumor Collaborative Registry (TCCR, http://tccr.unmc.edu) allows for the collection and management of various data on thyroid cancer (TC) and thyroid nodule (TN) patients. The TCCR is coupled with OpenSpecimen, an open-source biobank management system, to annotate biospecimens obtained from the TCCR subjects. The demographic, lifestyle, physical activity, dietary habits, family history, medical history, and quality of life data are provided and may be entered into the registry by subjects. Information on diagnosis, treatment, and outcome is entered by the clinical personnel. The TCCR uses advanced technical and organizational practices, such as (i) metadata-driven software architecture (design); (ii) modern standards and best practices for data sharing and interoperability (standardization); (iii) Agile methodology (project management); (iv) Software as a Service (SaaS) as a software distribution model (operation); and (v) the confederation principle as a business model (governance). This allowed us to create a secure, reliable, user-friendly, and self-sustainable system for TC and TN data collection and management that is compatible with various end-user devices and easily adaptable to a rapidly changing environment. Currently, the TCCR contains data on 2,261 subjects and data on more than 28,000 biospecimens. Data and biological samples collected by the TCCR are used in developing diagnostic, prevention, treatment, and survivorship strategies against TC. PMID:27168721

Thyroid Cancer and Tumor Collaborative Registry (TCCR).

PubMed

Shats, Oleg; Goldner, Whitney; Feng, Jianmin; Sherman, Alexander; Smith, Russell B; Sherman, Simon

2016-01-01

A multicenter, web-based Thyroid Cancer and Tumor Collaborative Registry (TCCR, http://tccr.unmc.edu) allows for the collection and management of various data on thyroid cancer (TC) and thyroid nodule (TN) patients. The TCCR is coupled with OpenSpecimen, an open-source biobank management system, to annotate biospecimens obtained from the TCCR subjects. The demographic, lifestyle, physical activity, dietary habits, family history, medical history, and quality of life data are provided and may be entered into the registry by subjects. Information on diagnosis, treatment, and outcome is entered by the clinical personnel. The TCCR uses advanced technical and organizational practices, such as (i) metadata-driven software architecture (design); (ii) modern standards and best practices for data sharing and interoperability (standardization); (iii) Agile methodology (project management); (iv) Software as a Service (SaaS) as a software distribution model (operation); and (v) the confederation principle as a business model (governance). This allowed us to create a secure, reliable, user-friendly, and self-sustainable system for TC and TN data collection and management that is compatible with various end-user devices and easily adaptable to a rapidly changing environment. Currently, the TCCR contains data on 2,261 subjects and data on more than 28,000 biospecimens. Data and biological samples collected by the TCCR are used in developing diagnostic, prevention, treatment, and survivorship strategies against TC.

Use of Patient Registries and Administrative Datasets for the Study of Pediatric Cancer

PubMed Central

Rice, Henry E.; Englum, Brian R.; Gulack, Brian C.; Adibe, Obinna O.; Tracy, Elizabeth T.; Kreissman, Susan G.; Routh, Jonathan C.

2015-01-01

Analysis of data from large administrative databases and patient registries is increasingly being used to study childhood cancer care, although the value of these data sources remains unclear to many clinicians. Interpretation of large databases requires a thorough understanding of how the dataset was designed, how data were collected, and how to assess data quality. This review will detail the role of administrative databases and registry databases for the study of childhood cancer, tools to maximize information from these datasets, and recommendations to improve the use of these databases for the study of pediatric oncology. PMID:25807938

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

PubMed

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

2017-11-28

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

Germline TP53 Mutations in Patients With Early-Onset Colorectal Cancer in the Colon Cancer Family Registry

PubMed Central

Yurgelun, Matthew B.; Masciari, Serena; Joshi, Victoria A.; Mercado, Rowena C.; Lindor, Noralane M.; Gallinger, Steven; Hopper, John L.; Jenkins, Mark A.; Buchanan, Daniel D.; Newcomb, Polly A.; Potter, John D.; Haile, Robert W.; Kucherlapati, Raju; Syngal, Sapna

2015-01-01

IMPORTANCE Li-Fraumeni syndrome, usually characterized by germline TP53 mutations, is associated with markedly elevated lifetime risks of multiple cancers, and has been linked to an increased risk of early-onset colorectal cancer. OBJECTIVE To examine the frequency of germline TP53 alterations in patients with early-onset colorectal cancer. DESIGN, SETTING, AND PARTICIPANTS This was a multicenter cross-sectional cohort study of individuals recruited to the Colon Cancer Family Registry (CCFR) from 1998 through 2007 (genetic testing data updated as of January 2015). Both population-based and clinic-based patients in the United States, Canada, Australia, and New Zealand were recruited to the CCFR. Demographic information, clinical history, and family history data were obtained at enrollment. Biospecimens were collected from consenting probands and families, including microsatellite instability and DNA mismatch repair immunohistochemistry results. A total of a 510 individuals diagnosed as having colorectal cancer at age 40 years or younger and lacking a known hereditary cancer syndrome were identified from the CCFR as being potentially eligible. Fifty-three participants were excluded owing to subsequent identification of germline mutations in DNA mismatch repair genes (n = 47) or biallelic MUTYH mutations (n = 6). INTERVENTIONS Germline sequencing of the TP53 gene was performed. Identified TP53 alterations were assessed for pathogenicity using literature and international mutation database searches and in silico prediction models. MAIN OUTCOMES AND MEASURES Frequency of nonsynonymous germline TP53 alterations. RESULTS Among 457 eligible participants (314, population-based; 143, clinic-based; median age at diagnosis, 36 years [range, 15–40 years]), 6 (1.3%; 95%CI, 0.5%–2.8%) carried germline missense TP53 alterations, none of whom met clinical criteria for Li-Fraumeni syndrome. Four of the identified TP53 alterations have been previously described in the literature

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

PubMed

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

2016-10-06

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

Cancer incidence, mortality, and survival in Eastern Libya: updated report from the Benghazi Cancer Registry.

PubMed

El Mistiri, Mufid; Salati, Massimiliano; Marcheselli, Luigi; Attia, Adel; Habil, Salah; Alhomri, Faraj; Spika, Devon; Allemani, Claudia; Federico, Massimo

2015-08-01

Despite the increasing burden of cancer occurred over recent years in the African continent, epidemiologic data from Northern Africa area have been so far sparse or absent. We present most recently available data from the Benghazi Cancer Registry concerning cancer incidence and mortality as well as the most comprehensive survival data set so far generated for cases diagnosed during 2003 to 2005 in Eastern Libya. We collected and analyzed data on cancer incidence, mortality and survival that were obtained over a 3-year study period from January 1st 2003 to December 31st 2005 from the Benghazi Cancer Registry. A total of 3307 cancer patients were registered among residents during the study period. The world age-standardized incidence rate for all sites was 135.4 and 107.1 per 100,000 for males and females, respectively. The most common malignancies in men were cancers of lung (18.9%), colorectum (10.4%), bladder (10.1%), and prostate (9.4%); among women, they were breast (23.2%), colorectum (11.2%), corpus uteri (6.7%), and leukemia (5.1%). A total of 1367 deaths for cancer were recorded from 2003 to 2005; the leading causes of cancer death were cancers of the lung (29.3%), colorectum (8.2%), and brain (7.3%) in males and cancers of breast (14.8%), colorectum (10.6%), and liver (7%) in females. The 5-year relative survival for all cancer combined was 22.3%; survival was lower in men (19.8%) than in women (28.2%). This study provides an updated report on cancer incidence, mortality, and survival, in Eastern Libya which may represent a useful tool for planning future interventions toward a better cancer control. Copyright © 2015 Elsevier Inc. All rights reserved.

Using cancer registries to assess the accuracy of primary liver or intrahepatic bile duct cancer as the underlying cause of death, 1999-2010.

PubMed

Polednak, Anthony P

2013-01-01

Inaccuracies in primary liver cancer (ie, excluding intrahepatic bile duct [IHBD]) or IHBD cancer as the underlying cause of death on the death certificate vs the cancer site in a cancer registry should be considered in surveillance of mortality rates in the population. Concordance between cancer site on the death record (1999-2010) and diagnosis (1973-2010) in the database for 9 cancer registries of the Surveillance, Epidemiology, and End Results (SEER) Program was examined for decedents with only 1 cancer recorded. Overreporting of deaths coded to liver cancer (ie, lack of confirmation in SEER) was largely balanced by underreporting (ie, a cancer site other than liver cancer in SEER). For IHBD cancer, overreporting was much more frequent than underreporting. Using modified rates, based on the most accurate numerators available, had little impact on trends for liver cancer in the SEER population, which were similar to trends for the entire US population based on routine statistics. An increase in the death rate for IHBD cancer, however, was no longer evident after modification. The findings support the use of routine data on underlying cause of death for surveillance of trends in death rates for liver cancer but not for IHBD cancer. Additional population-based cancer registries could potentially be used for surveillance of recent and future trends in mortality rates from these cancers.

Using a statistical process control chart during the quality assessment of cancer registry data.

PubMed

Myles, Zachary M; German, Robert R; Wilson, Reda J; Wu, Manxia

2011-01-01

Statistical process control (SPC) charts may be used to detect acute variations in the data while simultaneously evaluating unforeseen aberrations that may warrant further investigation by the data user. Using cancer stage data captured by the Summary Stage 2000 (SS2000) variable, we sought to present a brief report highlighting the utility of the SPC chart during the quality assessment of cancer registry data. Using a county-level caseload for the diagnosis period of 2001-2004 (n=25,648), we found the overall variation of the SS2000 variable to be in control during diagnosis years of 2001 and 2002, exceeded the lower control limit (LCL) in 2003, and exceeded the upper control limit (UCL) in 2004; in situ/localized stages were in control throughout the diagnosis period, regional stage exceeded UCL in 2004, and distant stage exceeded the LCL in 2001 and the UCL in 2004. Our application of the SPC chart with cancer registry data illustrates that the SPC chart may serve as a readily available and timely tool for identifying areas of concern during the data collection and quality assessment of central cancer registry data.

[Predictive value and sensibility of hospital discharge system (PMSI) compared to cancer registries for thyroïd cancer (1999-2000)].

PubMed

Carré, N; Uhry, Z; Velten, M; Trétarre, B; Schvartz, C; Molinié, F; Maarouf, N; Langlois, C; Grosclaude, P; Colonna, M

2006-09-01

Cancer registries have a complete recording of new cancer cases occurring among residents of a specific geographic area. In France, they cover only 13% of the population. For thyroid cancer, where incidence rate is highly variable according to the district conversely to mortality, national incidence estimates are not accurate. A nationwide database, such as hospital discharge system, could improve this estimate but its positive predictive value and sensibility should be evaluated. The positive predictive value and the sensitivity for thyroid cancer case ascertainment (ICD-10) of the national hospital discharge system in 1999 and 2000 were estimated using the cancer registries database of 10 French districts as gold standard. The linkage of the two databases required transmission of nominative information from the health facilities of the study. From the registries database, a logistic regression analysis was carried out to identify factors related to being missed by the hospital discharge system. Among the 973 standardized discharge charts selected from the hospital discharge system, 866 were considered as true positive cases, and 107 as false positive. Forty five of the latter group were prevalent cases. The predictive positive value was 89% (95% confidence interval (CI): 87-91%) and did not differ according to the district (p=0,80). According to the cancer registries, 322 thyroid cancer cases diagnosed in 1999 or 2000 were missed by the hospital discharge system. Thus, the sensitivity of this latter system was 73% (70-76%) and varied significantly from 62% to 85% across districts (p<0.001) and according to the type of health facility (p<0.01). Predictive positive value of the French hospital discharge system for ascertainment of thyroid cancer cases is high and stable across districts. Sensitivity is lower and varies significantly according to the type of health facility and across districts, which limits the interest of this database for a national estimate of

Assessing the utility of cancer-registry-processed cause of death in calculating cancer-specific survival.

PubMed

Hu, Chung-Yuan; Xing, Yan; Cormier, Janice N; Chang, George J

2013-05-15

Cancer registries use algorithms to process cause of death (COD) data from death certificates, but uncertainties remain regarding the accuracy and utility of those data in calculating cancer-specific survival (CSS). Because it is impractical to reconfirm the COD through meticulous review of the primary medical records, the observed cancer deaths could be compared with the number of attributed deaths, as estimated by using a relative survival (RS) approach, to determine utility in CSS estimation. Six major cancer types were evaluated using Surveillance, Epidemiology, and End Results (SEER) data (1988-1999 cohort). The COD utility was quantified by using the observed-to-expected ratio (O/E ratio) approach, which was calculated as the SEER-documented observed number of cancer-specific deaths divided by the number of expected deaths attributed to the malignancies as estimated using a RS approach. Favorable utility would have an O/E ratio close to 1. In total, 338,445 patients were identified; and their O/E ratios were 0.97, 0.98, 0.90, 1.07, 1.02, and 0.92 for breast, colorectal, lung, melanoma, prostate, and pancreas cancer, respectively. O/E ratios varied slightly with patients' age, race, and tumor stage, but not by sex. CSS for patients with lung cancer appeared to be overestimated considerably. Patients with multiple cancer diagnoses had poor O/E ratios compared with those who had only 1 cancer. The utility of COD in calculating CSS depended variously on the risk of cancer-related mortality and nontumor factors. However, the impact of this variation on CSS generally was small. The current results indicated that the COD assigned by cancer registries has acceptable validity, and CSS is considered an acceptable surrogate for RS in most circumstances. Copyright © 2013 American Cancer Society.

SEER Cancer Registry Biospecimen Research: Yesterday and Tomorrow

PubMed Central

Altekruse, Sean F.; Rosenfeld, Gabriel E.; Carrick, Danielle M.; Pressman, Emilee J.; Schully, Sheri D.; Mechanic, Leah E.; Cronin, Kathleen A.; Hernandez, Brenda Y.; Lynch, Charles F.; Cozen, Wendy; Khoury, Muin J.; Penberthy, Lynne T.

2014-01-01

The National Cancer Institute's (NCI) Surveillance, Epidemiology, and End Results (SEER) registries have been a source of biospecimens for cancer research for decades. Recently, registry-based biospecimen studies have become more practical, with the expansion of electronic networks for pathology and medical record reporting. Formalin-fixed paraffin-embedded specimens are now used for next-generation sequencing and other molecular techniques. These developments create new opportunities for SEER biospecimen research. We evaluated 31 research articles published during 2005–2013 based on author confirmation that these studies involved linkage of SEER data to biospecimens. Rather than providing an exhaustive review of all possible articles, our intent was to indicate the breadth of research made possible by such a resource. We also summarize responses to a 2012 questionnaire that was broadly distributed to the NCI intra- and extramural biospecimen research community. This included responses from 30 investigators who had used SEER biospecimens in their research. The survey was not intended to be a systematic sample, but instead to provide anecdotal insight on strengths, limitations, and the future of SEER biospecimen research. Identified strengths of this research resource include biospecimen availability, cost, and annotation of data, including demographic information, stage, and survival. Shortcomings include limited annotation of clinical attributes such as detailed chemotherapy history and recurrence, and timeliness of turnaround following biospecimen requests. A review of selected SEER biospecimen articles, investigator feedback, and technological advances reinforced our view that SEER biospecimen resources should be developed. This would advance cancer biology, etiology, and personalized therapy research. PMID:25472677

Adherence to adjuvant endocrine therapy: is it a factor for ethnic differences in breast cancer outcomes in New Zealand?

PubMed

Seneviratne, Sanjeewa; Campbell, Ian; Scott, Nina; Kuper-Hommel, Marion; Kim, Boa; Pillai, Avinesh; Lawrenson, Ross

2015-02-01

Despite the benefits of adjuvant endocrine therapy for hormone receptor positive breast cancer, many women are non-adherent or discontinue endocrine treatment early. We studied differences in adherence to adjuvant endocrine therapy by ethnicity in a cohort of New Zealand women with breast cancer and its impact on breast cancer outcomes. We analysed data on women (n = 1149) with newly diagnosed hormone receptor positive, non-metastatic, invasive breast cancer who were treated with adjuvant endocrine therapy in the Waikato during 2005-2011. Linked data from the Waikato Breast Cancer Registry and National Pharmaceutical Database were examined to identify differences by ethnicity in adherence to adjuvant endocrine therapy and the effect of sub-optimal adherence on cancer recurrence and mortality. Overall, a high level of adherence of ≥80% was observed among 70.4% of women, which declined from 76.8% to 59.3% from the first to fifth year of treatment. Māori women were significantly more likely to be sub-optimally adherent (<80%) compared with European women (crude rate 37% vs. 28%, p = 0.005, adjusted OR = 1.51, 95% CI 1.04-2.17). Sub-optimal adherence was associated with a significantly higher risk of breast cancer mortality (HR = 1.77, 95% CI 1.05-2.99) and recurrence (HR = 2.14, 95% CI 1.46-3.14). Sub-optimal adherence to adjuvant endocrine therapy was a likely contributor for breast cancer mortality inequity between Māori and European women, and highlights the need for future research to identify effective ways to increase adherence in Māori women. Copyright © 2014 Elsevier Ltd. All rights reserved.

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

PubMed

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

2015-05-01

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

Changes in Awareness of Cancer Risk Factors among Adult New Zealanders (CAANZ): 2001 to 2015

ERIC Educational Resources Information Center

Richards, R.; McNoe, B.; Iosua, E.; Reeder, A. I.; Egan, R.; Marsh, L.; Robertson, L.; Maclennan, B.; Dawson, A.; Quigg, R.; Petersen, A.-C.

2017-01-01

Behaviour change, specifically that which decreases cancer risk, is an essential element of cancer control. Little information is available about how awareness of risk factors may be changing over time. This study describes the awareness of cancer risk behaviours among adult New Zealanders in two cross-sectional studies conducted in 2001 and…

Cancer patterns among children of Turkish descent in Germany: A study at the German Childhood Cancer Registry

PubMed Central

Spallek, Jacob; Spix, Claudia; Zeeb, Hajo; Kaatsch, Peter; Razum, Oliver

2008-01-01

Background Cancer risks of migrants might differ from risks of the indigenous population due to differences in socioeconomic status, life style, or genetic factors. The aim of this study was to investigate cancer patterns among children of Turkish descent in Germany. Methods We identified cases with Turkish names (as a proxy of Turkish descent) among the 37,259 cases of childhood cancer registered in the German Childhood Cancer Registry (GCCR) during 1980–2005. As it is not possible to obtain reference population data for children of Turkish descent, the distribution of cancer diagnoses was compared between cases of Turkish descent and all remaining (mainly German) cases in the registry, using proportional cancer incidence ratios (PCIRs). Results The overall distribution of cancer diagnoses was similar in the two groups. The PCIRs in three diagnosis groups were increased for cases of Turkish descent: acute non-lymphocytic leukaemia (PCIR 1.23; CI (95%) 1.02–1.47), Hodgkin's disease (1.34; 1.13–1.59) and Non-Hodgkin/Burkitt lymphoma (1.19; 1.02–1.39). Age, sex, and period of diagnosis showed no influence on the distribution of diagnoses. Conclusion No major differences were found in cancer patterns among cases of Turkish descent compared to all other cases in the GCCR. Slightly higher proportions of systemic malignant diseases indicate that analytical studies involving migrants may help investigating the causes of such cancers. PMID:18462495

Incidence of esophageal cancer in Sri Lanka: Analysis of cancer registry data and comparison with other South Asian populations.

PubMed

Wickramasinghe, Dakshitha P; Samarasekera, Dharmabandhu N

2017-10-01

The objectives of this study were to report the incidence of Carcinoma of Esophagus (CaE) in Sri Lanka and to compare these values with other cancer registry data of the region and with migrant populations. We compared the data published by the National Cancer Control Program over the last two decades with data from the National Cancer Registry Programme of the Indian Council of Medical Research and Karachi Cancer Registry. SEERstat was used to analyze the surveillance, epidemiology and end results database to analyze data on Indian migrant population. CaE was the fourth most common cancer overall and among females and third most common cancer among males. The incidence of CaE rises with age in both sexes, with a peak in the 70-74 year age group. There was a disproportionately higher number of CaE in the Tamil population (chi-square test, P < 0.00001). The commonest type of CaE in Sri Lanka was squamous cell carcinoma, Not otherwise specified (NOS) (n = 750, 70.5%), followed by adenocarcinoma, NOS (n = 83, 7.8%). India, Pakistan and Sri Lanka have comparable age-adjusted incidence and age distribution of CaE. All migrant populations had lower incidence of CaE than original population or population in their present country. Both cigarette smoking and alcohol consumption are more prevalent in Sri Lankan males than females. The incidence of CaE and its distribution among age groups in Sri Lanka was comparable to other countries of the region. Persons of Tamil ethnicity have a higher risk of developing CaE. © 2016 John Wiley & Sons Australia, Ltd.

Rurality and Other Determinants of Early Colorectal Cancer Diagnosis in Nebraska: A 6-Year Cancer Registry Study, 1998-2003

ERIC Educational Resources Information Center

Sankaranarayanan, Jayashri; Watanabe-Galloway, Shinobu; Sun, Junfeng; Qiu, Fang; Boilesen, Eugene; Thorson, Alan G.

2009-01-01

Background: There are no studies of rurality, and other determinants of colorectal cancer (CRC) stage at diagnosis with population-based data from the Midwest. Methods: This retrospective study identified, incident CRC patients, aged 19 years and older, from 1998-2003 Nebraska Cancer Registry (NCR) data. Using federal Office of Management and…

Co-Care: A Registry for Individuals at Increased Risk for Colorectal Cancer.

PubMed

Sperling, Dylan; Jandorf, Lina; Sriphanlop, Pathu; Martinez, Clarissa; Brown, Karen L; Soper, Emily R; Hiraki, Susan; Itzkowitz, Steven H

2017-01-01

INTRODUCTION: Colorectal cancer (CRC) is one of the leading causes of cancer death for both men and women in the United States. Several factors can increase one’s risk of CRC, including a personal or family history of CRC, a diagnosis or family history of a hereditary colon cancer syndrome, or a diagnosis of chronic inflammatory bowel disease. The purpose of this project was to create a colorectal cancer registry (Co-Care) for individuals with a personal or family history of CRC, and those with disorders of the colon or rectum that are associated with an increased risk for developing CRC. Methods: To be eligible for the registry, patients either had a personal or family history of CRC, a diagnosis or family history of Lynch syndrome, familial adenomatous polyposis, or a diagnosis of Crohn’s colitis or ulcerative colitis with dysplasia. Participants were recruited after seeing their gastroenterologist or genetic counselor, or after undergoing a full or partial colectomy at Mount Sinai Hospital in New York City. Eligible patients who agreed to participate were interviewed by a member of the research staff and asked a wide range of questions pertaining to CRC risk. RESULTS: A total of 224 patients were enrolled in the registry. Participants are mostly white, born in the United States, and married, with a bachelor’s or graduate degree, reporting an annual household income of $100,000 or more. The largest portion have a family history of CRC (27.2%), and almost half of participants are of Jewish descent (46.2%) and have undergone full or partial colectomy (48.2%). More than half of participants have neither received genetic counseling (54.5%) nor undergone genetic testing (59.7%). Only 3.6% report that they currently smoke cigarettes, and 41.1% consume alcohol at least once per week. Lastly, 18.3%, 10.3%, and 27.7% of participants report that they currently take aspirin, folic acid/folate pills or tablets, or calcium pills/tablets, respectively. CONCLUSIONS: This

Cancer Information Seeking Among Adult New Zealanders: a National Cross-Sectional Study.

PubMed

Richards, Rosalina; McNoe, Bronwen; Iosua, Ella; Reeder, Anthony; Egan, Richard; Marsh, Louise; Robertson, Lindsay; Maclennan, Brett; Dawson, Anna; Quigg, Robin; Petersen, Anne-Cathrine

2018-06-01

Organisations seeking to establish themselves as leading cancer information sources for the public need to understand patterns and motivators for information seeking. This study describes cancer information seeking among New Zealanders through a national cross-sectional survey conducted in 2014/15 with a population-based sample of adults (18 years and over). Participants were asked if they had sought information about cancer during the past 12 months, the type of information they sought, what prompted them to look for information and ways of getting information they found helpful. Telephone interviews were completed by 1064 participants (588 females, 476 males, 64% response rate). Of these, 33.8% of females and 23.3% of males (total, 29.2%) had searched for information about cancer over the past year. A search was most frequently prompted by a cancer diagnosis of a family member or friend (43.3%), a desire to educate themselves (17.5%), experience of potential symptoms or a positive screening test (9.4%), family history of cancer (8.9%) or the respondent's own cancer diagnosis (7.7%). Across the cancer control spectrum, the information sought was most commonly about treatment and survival (20.2%), symptoms/early detection (17.2%) or risk factors (14.2%), although many were general or non-specific queries (50.0%). The internet was most commonly identified as a helpful source of information (71.7%), followed by health professionals (35.8%), and reading material (e.g. books, pamphlets) (14.7%).This study provides a snapshot of cancer information seeking in New Zealand, providing valuable knowledge to help shape resource delivery to better meet the diverse needs of information seekers and address potential unmet needs, where information seeking is less prevalent.

The national database of hospital-based cancer registries: a nationwide infrastructure to support evidence-based cancer care and cancer control policy in Japan.

PubMed

Higashi, Takahiro; Nakamura, Fumiaki; Shibata, Akiko; Emori, Yoshiko; Nishimoto, Hiroshi

2014-01-01

Monitoring the current status of cancer care is essential for effective cancer control and high-quality cancer care. To address the information needs of patients and physicians in Japan, hospital-based cancer registries are operated in 397 hospitals designated as cancer care hospitals by the national government. These hospitals collect information on all cancer cases encountered in each hospital according to precisely defined coding rules. The Center for Cancer Control and Information Services at the National Cancer Center supports the management of the hospital-based cancer registry by providing training for tumor registrars and by developing and maintaining the standard software and continuing communication, which includes mailing lists, a customizable web site and site visits. Data from the cancer care hospitals are submitted annually to the Center, compiled, and distributed as the National Cancer Statistics Report. The report reveals the national profiles of patient characteristics, route to discovery, stage distribution, and first-course treatments of the five major cancers in Japan. A system designed to follow up on patient survival will soon be established. Findings from the analyses will reveal characteristics of designated cancer care hospitals nationwide and will show how characteristics of patients with cancer in Japan differ from those of patients with cancer in other countries. The database will provide an infrastructure for future clinical and health services research and will support quality measurement and improvement of cancer care. Researchers and policy-makers in Japan are encouraged to take advantage of this powerful tool to enhance cancer control and their clinical practice.

Validity of self-reported cancer history in the health examinees (HEXA) study: A comparison of self-report and cancer registry records.

PubMed

Cho, Sooyoung; Shin, Aesun; Song, Daesub; Park, Jae Kyung; Kim, Yeonjung; Choi, Ji-Yeob; Kang, Daehee; Lee, Jong-Koo

2017-10-01

To assess the validity of the cohort study participants' self-reported cancer history via data linkage to a cancer registry database. We included 143,965 participants from the Health Examinees (HEXA) study recruited between 2004 and 2013 who gave informed consent for record linkage to the Korean Central Cancer Registry (KCCR). The sensitivity and the positive predictive value of self-reported histories of cancer were calculated and 95% confidence intervals were estimated. A total of 4,860 participants who had at least one record in the KCCR were included in the calculation of sensitivity. In addition, 3,671 participants who reported a cancer history at enrollment were included in the calculation of positive predictive value. The overall sensitivity of self-reported cancer history was 72.0%. Breast cancer history among women showed the highest sensitivity (81.2%), whereas the lowest sensitivity was observed for liver cancer (53.7%) and cervical cancer (52.1%). The overall positive predictive value was 81.9%. The highest positive predictive value was observed for thyroid cancer (96.1%) and prostate cancer (96.1%), and the lowest was observed for cervical cancer (43.7%). The accuracy of self-reported cancer history varied by cancer site and may not be sufficient to ascertain cancer incidence, especially for cervical and bladder cancers. Copyright © 2017. Published by Elsevier Ltd.

Sex differences in lung cancer survival: long-term trends using population-based cancer registry data in Osaka, Japan.

PubMed

Kinoshita, Fukuaki Lee; Ito, Yuri; Morishima, Toshitaka; Miyashiro, Isao; Nakayama, Tomio

2017-09-01

Several studies of sex differences in lung cancer survival have been reported. However, large-size population-based studies based on long-term observation are scarce. We investigated long-term trends in sex differences in lung cancer survival using population-based cancer registry data from Osaka, Japan. We analyzed 79 330 cases from the Osaka Cancer Registry (OCR) diagnosed between 1975 and 2007. We calculated 5-year relative survival in the six periods (1975-1980, 1981-1986, 1987-1992, 1993-1997, 1998-2002 and 2003-2007). To estimate the trends in sex differences in lung cancer survival throughout the study period, we applied a multivariate excess hazard model to control for confounders. The proportion of adenocarcinoma (ADC) and 5-year relative relative survival have increased for both sexes. Sex differences in lung cancer survival have widened over the period, especially in ADC and since the late 1990s. The excess hazard ratio of death within 5 years for males was 1.19 (95% CI: 1.16-1.21), adjusting for period at diagnosis, histologic type, stage, age group and treatment. We reported that females have better prognosis in lung cancer than males and the sex differences in lung cancer survival have become wider in Osaka, Japan. This can be partly explained by the sex differences in the proportions of histologic type and stage. Further studies considering other factors that influence sex differences in lung cancer survival are needed. © The Author 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

Cancer incidence and incidence rates in Japan in 2008: a study of 25 population-based cancer registries for the Monitoring of Cancer Incidence in Japan (MCIJ) project.

PubMed

Matsuda, Ayako; Matsuda, Tomohiro; Shibata, Akiko; Katanoda, Kota; Sobue, Tomotaka; Nishimoto, Hiroshi

2014-04-01

The Japan Cancer Surveillance Research Group aimed to estimate the cancer incidence in Japan in 2008 based on data collected from 25 of 34 population-based cancer registries, as part of the Monitoring of Cancer Incidence in Japan project. The incidence in Japan for 2008 was estimated to be 749 767 (C00-C96). Stomach cancer and breast cancer were the leading types of cancer in males and females, respectively.

Unequal care for dying patients in Sweden: a comparative registry study of deaths from heart disease and cancer.

PubMed

Brännström, Margareta; Hägglund, Lena; Fürst, Carl Johan; Boman, Kurt

2012-12-01

The Swedish Palliative Registry is a nationwide quality registry aimed at facilitating improvement in end-of-life care. The goal is for the registry to list and report quality indicators related to care during the last week of life in all cases expected death in Sweden. To examine the quality of care during the last week of life as reported to the registry for patients with heart disease compared to those with cancer. A retrospective registry study. Patients dying of heart disease compared to those dying from cancer had more shortness of breath, fewer drugs prescribed as needed against the usual symptoms and often died alone. Furthermore, they and their close relatives received less information about the imminence of death and bereavement follow-up was less common. The healthcare personnel were less aware of the heart disease patients' symptoms and less often knew about where they wished to die. Great differences were found in registered end-of-life care suggesting that the care given to patients with heart disease and cancer was unequal even after adjustment for age, sex and setting at the time of death. If our observational findings are confirmed in future studies there is obviously a need for new models for end-of-life management in order to facilitate the provision of equal care to dying patients regardless of diagnosis.

Automated selection of relevant information for notification of incident cancer cases within a multisource cancer registry.

PubMed

Jouhet, V; Defossez, G; Ingrand, P

2013-01-01

The aim of this study was to develop and evaluate a selection algorithm of relevant records for the notification of incident cases of cancer on the basis of the individual data available in a multi-source information system. This work was conducted on data for the year 2008 in the general cancer registry of Poitou-Charentes region (France). The selection algorithm hierarchizes information according to its level of relevance for tumoral topography and tumoral morphology independently. The selected data are combined to form composite records. These records are then grouped in respect with the notification rules of the International Agency for Research on Cancer for multiple primary cancers. The evaluation, based on recall, precision and F-measure confronted cases validated manually by the registry's physicians with tumours notified with and without records selection. The analysis involved 12,346 tumours validated among 11,971 individuals. The data used were hospital discharge data (104,474 records), pathology data (21,851 records), healthcare insurance data (7508 records) and cancer care centre's data (686 records). The selection algorithm permitted performances improvement for notification of tumour topography (F-measure 0.926 with vs. 0.857 without selection) and tumour morphology (F-measure 0.805 with vs. 0.750 without selection). These results show that selection of information according to its origin is efficient in reducing noise generated by imprecise coding. Further research is needed for solving the semantic problems relating to the integration of heterogeneous data and the use of non-structured information.

Occupational risk factors for testicular cancer: a registry-based case-control study in Rhineland Palatinate – Germany

PubMed Central

Yousif, Lamyaa; Hammer, Gaël P.; Emrich, Katharina; Blettner, Maria; Zeeb, Hajo

2013-01-01

Objectives: Testicular cancer affects mainly men below the age of 50. An association with occupation and social status has been suggested but risk factors are not well understood. A registry-based case-control study focusing on occupation was performed in Germany. Methods: All 348 testicular cancer cases with available gainful occupational information registered between 2000 and 2005; as well as 564 suitable controls (from a pool of other cancers) were drawn from the Cancer Registry of Rhineland-Palatinate. Unconditional logistic regression was used to compute odds ratios (OR) and associated 95% confidence intervals (CI). Results: Slightly elevated OR were observed for technicians and related professionals (OR 1.62, 95% CI 1.00–2.63) and for clerical support workers (OR 1.71, 95% CI 1.14–2.56). This increase was highest in the age group 20–50 for technicians (OR 2.02, 95% CI 1.23–3.33) and clerks (OR 2.00, 95% CI 1.30–3.09), respectively. An association with testicular cancer was observed for no other occupation. Conclusion: An increased risk of testicular cancer was observed for technicians and related professionals and clerical support workers. This could be related to socioeconomic status or sedentary life style, two factors that were identified in previous studies. While the feasibility of a purely registry-based study was shown, missing occupational data and the choice of cancer controls represent challenges to the validity of this approach. PMID:24265602

Differences in Breast Cancer Survival between Public and Private Care in New Zealand: Which Factors Contribute?

PubMed

Tin Tin, Sandar; Elwood, J Mark; Lawrenson, Ross; Campbell, Ian; Harvey, Vernon; Seneviratne, Sanjeewa

2016-01-01

Patients who received private health care appear to have better survival from breast cancer compared to those who received public care. This study investigated if this applied to New Zealand women and identified factors that could explain such disparities. This study involved all women who were diagnosed with primary breast cancer in two health regions in New Zealand, covering about 40% of the national population, between June 2000 and May 2013. Patients who received public care for primary treatment, mostly surgical treatment, were compared with those who received private care in terms of demographics, mode of presentation, disease factors, comorbidity index and treatment factors. Cox regression modelling was performed with stepwise adjustments, and hazards of breast cancer specific mortality associated with the type of health care received was assessed. Of the 14,468 patients, 8,916 (61.6%) received public care. Compared to patients treated in private care facilities, they were older, more likely to be Māori, Pacifika or Asian and to reside in deprived neighbourhoods and rural areas, and less likely to be diagnosed with early staged cancer and to receive timely cancer treatments. They had a higher risk of mortality from breast cancer (hazard ratio: 1.95; 95% CI: 1.75, 2.17), of which 80% (95% CI: 63%, 100%) was explained by baseline differences, particularly related to ethnicity, stage at diagnosis and type of loco-regional therapy. After controlling for these demographic, disease and treatment factors, the risk of mortality was still 14% higher in the public sector patients. Ethnicity, stage at diagnosis and type of loco-regional therapy were the three key contributors to survival disparities between patients treated in public and private health care facilities in New Zealand. The findings underscore the need for more efforts to improve the quality, timeliness and equitability of public cancer care services.

Validity of cancer diagnosis in the National Health Insurance database compared with the linked National Cancer Registry in Taiwan.

PubMed

Kao, Wei-Heng; Hong, Ji-Hong; See, Lai-Chu; Yu, Huang-Ping; Hsu, Jun-Te; Chou, I-Jun; Chou, Wen-Chi; Chiou, Meng-Jiun; Wang, Chun-Chieh; Kuo, Chang-Fu

2017-08-16

We aimed to evaluate the validity of cancer diagnosis in the National Health Insurance (NHI) database, which has routinely collected the health information of almost the entire Taiwanese population since 1995, compared with the Taiwan National Cancer Registry (NCR). There were 26,542,445 active participants registered in the NHI database between 2001 and 2012. National Cancer Registry and NHI database records were compared for cancer diagnosis; date of cancer diagnosis; and 1, 2, and 5 year survival. In addition, the 10 leading causes of cancer deaths in Taiwan were analyzed. There were 908,986 cancer diagnoses in NCR and NHI database and 782,775 (86.1%) in both, with 53,192 (5.9%) in the NHI database only and 73,019 (8.0%) in the NCR only. The positive predictive value of the NHI database cancer diagnoses was 94% for all cancers; the positive predictive value of the 10 specific cancers ranged from 95% (lung cancer) to 82% (cervical cancer). The date of diagnosis in the NHI database was generally delayed by a median of 15 days (interquartile range 8-18) compared with the NCR. The 1, 2, and 5 year survival rates were 71.21%, 60.85%, and 47.44% using the NHI database and were 71.18%, 60.17%, and 46.09% using NCR data. Recording of cancer diagnoses and survival estimates based on these diagnosis codes in the NHI database are generally consistent with the NCR. Studies using NHI database data must pay careful attention to eligibility and record linkage; use of both sources is recommended. Copyright © 2017 John Wiley & Sons, Ltd.

Validation of a gastric cancer nomogram using a cancer registry.

PubMed

Ashfaq, Awais; Kidwell, John T; McGhan, Lee J; Dueck, Amylou C; Pockaj, Barbara A; Gray, Richard J; Bagaria, Sanjay P; Wasif, Nabil

2015-09-01

A Memorial Sloan Kettering (MSKCC) nomogram predicts disease specific survival (DSS) for gastric adenocarcinoma. The goal of this study is to use a cancer registry to compare nomogram predicted survival with actual survival in the general population. All patients undergoing surgery for gastric adenocarcinoma from the Surveillance, Epidemiology, and End Results (SEER) database (1988-2012) were studied. 6954 patients were identified. Majority of cancers were in the antrum (30.2%), and had intestinal histology (73.7%). Median follow-up was 8.2 years. Five year DSS for nomogram risk groups (0-25%, 26-50%, 51-75%, and 76-100%) was 23%, 48%, 57%, and 81% respectively. Actual DSS was 7-15% lower than nomogram predicted DSS. Relative to patients in the 76-100% 5-year DSS risk group, patients in the 0-25%, 26-50%, and 51-75% groups had significantly higher risks of death with hazard ratios of 6.84 (95%CI 6.12-7.65), 3.30 (95%CI 2.83-3.86), and 2.64 (95%CI 2.30-3.03), respectively (all P < 0.001). The concordance index for 5-year nomogram predicted DSS was 0.68 (95%CI 0.67-0.69). The MSKCC gastric cancer nomogram over-estimates DSS from gastric cancer in the general population and has a moderate concordance index. Predictive tools generated at specialized institutions may not perform as well in the general population. © 2015 Wiley Periodicals, Inc.

Gastric Cancer Incidence Estimation in a Resource-Limited Nation: Use of Endoscopy Registry Methodology

PubMed Central

Dominguez, Ricardo L.; Crockett, Seth D.; Lund, Jennifer L.; Suazo, Lia P.; Heidt-Davis, Paris; Martin, Christopher; Morgan, Douglas R.

2013-01-01

Purpose Cancer epidemiology is challenging in developing nations, in the absence of reliable pathology-based cancer registries. Clinical experience suggests that the incidence of gastric cancer is high in Honduras, in contrast to the limited available national statistics at the time of study initiation (IARC GLOBOCAN 2002: males 15.2, females 10.8). We estimate the incidence of gastric cancer for Honduras using an endoscopy registry as a complimentary resource. Methods We conducted a retrospective analysis of incident noncardia gastric adenocarcinoma cases in Western Honduras for the period 2000–2009. This region is well circumscribed geopolitically with a single district hospital and established referral patterns, to provide a unique epidemiological niche to facilitate estimation of incidence rates. A prospective, comprehensive database of all endoscopy procedures from this hospital was utilized at the primary data source. The catchment area for gastroenterology services for the at-risk population was validated by calculating the overall endoscopy utilization rates for each municipality in western Honduras. Incident cases of gastric adenocarcinoma were determined by the endoscopic diagnosis. Pathology services are not financed by the Ministry of Health, and histology data was incorporated when available. Population statistics were obtained from the Honduras National Statistics Institute (INE). Age standardized incidence rates (ASIRs) were calculated using world standard population fractions. Results The catchment area for Western Honduras was validated with the municipality threshold of 30 endoscopies per 106 person-years, with inclusion of a total of 40 municipalities. In the Western Honduras catchment area, there were 670 incident cases (439 M, 231 F) of noncardia gastric adenocarcinoma during the study decade 2000–2009. Notably, 67 (10.0%) and 165 (24.6%) of cases were under the ages of 45 and 55, respectively. The case-finding rate was 5.1 endoscopies

Cost of breast cancer based on real-world data: a cancer registry study in Italy.

PubMed

Capri, Stefano; Russo, Antonio

2017-01-26

In European countries, it is difficult for local health organizations to determine the resources allocated to different hospitals for breast cancer. The aim of the current study was to examine the costs of breast cancer during the different phases of the diagnostictherapeutic sequence based on real world data. To identify breast cancer cases diagnosed between 2007 and 2011, we used the cancer registry of the Agency for Health Protection of the Province of Milan (3.2 million inhabitants). A generalized linear model controlling for patient age, cancer stage and Charlson co-morbidity index was used to calculate the adjusted mean costs for each hospital and for each study phase. Regression analyses were based on dependent variables of individual costs (diagnosis, treatment, follow-up and total cost were logtransformed. The following independent variables were included as covariates: age at diagnosis, hospital volume, stage, job category, educational level, marital status, comorbidities, deprivation index. Total and mean costs were computed for several variables and for each phase. On average for each subject, the costs were collected over 2.5 years. A total of 12,580 breast cancer cases were studied. The mean cost of diagnosis was €414, the mean cost of treatment was €8,780, the mean overall cost of follow-up was approximately €2,351, and the mean total direct medical cost was €10,970. The age of the patients, stage of tumor and employment level of the patient were significantly correlated with the variability of the costs. The highest variability in costs was observed for the follow-up costs, in which 38% of hospitals fell outside the 95% confidence interval. In the overspending-hospitals, patients received an intensive follow-up regimen with scintigraphy and thoracic CAT (computerized axial tomography). In this study, which represents the first population-level study of its kind in Italy, we estimated all direct medical costs for the 6-month period before

[The contribution of the Italian association of cancer registries (AIRTUM)].

PubMed

Crocetti, Emanuele; Buzzoni, Carlotta

2016-01-01

The study of cluster requires the ability to identify, with accuracy and completeness, the health events of interest and their geographical location and time of occurrence. For rare and complex diseases, such as childhood cancers, it is possible to observe a significant health migration from the place of residence, which makes the detection even more complex. The best tool to identify these rare diseases is represented by cancer registries (CRs). In fact, CRs collect, through many sources, information related to tumours that arise in the population resident in their areas of activity. The number of the sources of information has increased thanks to the computerization of health services. The availability of multiple sources of information increases the completeness of data collection overcoming the limits of a single source, and makes it possible to describe the diagnostic-therapeutic course and the outcome of the cases. Among all data sources, for childhood cancers the model 1.01, which summarize the clinical information of the cases treated in one of the Italian Association of paediatric haematology and oncology (AIEOP) centres, is relevant. Moreover, CRs produce reliable and comparable data due to the use of international rules and classifications for the definition of the topography and morphology of cancer, for the date of diagnosis, and for quality checks. In Italy, the Italian association of cancer registries (AIRTUM) coordinates the activities of 45 population CRs, both general and specialized (by age or tumour type). AIRTUM involves a population of over 6.7 million citizens under the age of 20 years, approximately 60% of the total resident population. AIRTUM plays a role of coordination, support, and harmonization for Italian CRs through training, accreditation, and a shared database, it promotes and participates in national and international collaboration involving scientific societies (AIEOP, Italian Association of medical oncology - AIOM, Italian

Rare malignant pediatric tumors registered in the German Childhood Cancer Registry 2001-2010.

PubMed

Brecht, Ines B; Bremensdorfer, Claudia; Schneider, Dominik T; Frühwald, Michael C; Offenmüller, Sonja; Mertens, Rolf; Vorwerk, Peter; Koscielniak, Ewa; Bielack, Stefan S; Benesch, Martin; Hero, Barbara; Graf, Norbert; von Schweinitz, Dietrich; Kaatsch, Peter

2014-07-01

The German Childhood Cancer Registry (GCCR) annually registers approximately 2,000 children diagnosed with a malignant disease (completeness of registration >95%). While most pediatric cancer patients are diagnosed and treated according to standardized cooperative protocols of the German Society for Pediatric Oncology and Hematology (GPOH), patients with rare tumors are at risk of not being integrated in the network including trials and reference centers. A retrospective analysis of all rare extracranial solid tumors reported to the GCCR 2001-2010 (age <18 years) was undertaken using a combination of the International Classification of Childhood Cancer (ICCC-3) and the International Classification of Diseases-Oncology (ICD-O-3). Tumors accounting for <0.3% of all malignancies were defined as rare (approx. 6 cases/year and registered malignancy). According to this definition 1,189 rare extracranial solid tumors (18.2% of all malignant extracranial solid tumors) were registered, among these 232 patients (19.5% of rare tumor cases), were not included in preexisting GPOH studies/registries. Within 10 years, the number of registered non-GPOH-trial patients with a rare tumor increased. Though most of the GCCR-registered patients with rare malignant tumors are treated within GPOH trials, there is a considerable number of patients that have been diagnosed and treated outside the structures of the GPOH. These patients should be reported to the recently founded German Pediatric Rare Tumor Registry (STEP). Active data accrual and the development of appropriate structures will allow for better registration and improvement of medical care in these patients. © 2014 Wiley Periodicals, Inc.

Breast cancer treatment across health care systems: linking electronic medical records and state registry data to enable outcomes research.

PubMed

Kurian, Allison W; Mitani, Aya; Desai, Manisha; Yu, Peter P; Seto, Tina; Weber, Susan C; Olson, Cliff; Kenkare, Pragati; Gomez, Scarlett L; de Bruin, Monique A; Horst, Kathleen; Belkora, Jeffrey; May, Suepattra G; Frosch, Dominick L; Blayney, Douglas W; Luft, Harold S; Das, Amar K

2014-01-01

Understanding of cancer outcomes is limited by data fragmentation. In the current study, the authors analyzed the information yielded by integrating breast cancer data from 3 sources: electronic medical records (EMRs) from 2 health care systems and the state registry. Diagnostic test and treatment data were extracted from the EMRs of all patients with breast cancer treated between 2000 and 2010 in 2 independent California institutions: a community-based practice (Palo Alto Medical Foundation; "Community") and an academic medical center (Stanford University; "University"). The authors incorporated records from the population-based California Cancer Registry and then linked EMR-California Cancer Registry data sets of Community and University patients. The authors initially identified 8210 University patients and 5770 Community patients; linked data sets revealed a 16% patient overlap, yielding 12,109 unique patients. The percentage of all Community patients, but not University patients, treated at both institutions increased with worsening cancer prognostic factors. Before linking the data sets, Community patients appeared to receive less intervention than University patients (mastectomy: 37.6% vs 43.2%; chemotherapy: 35% vs 41.7%; magnetic resonance imaging: 10% vs 29.3%; and genetic testing: 2.5% vs 9.2%). Linked Community and University data sets revealed that patients treated at both institutions received substantially more interventions (mastectomy: 55.8%; chemotherapy: 47.2%; magnetic resonance imaging: 38.9%; and genetic testing: 10.9% [P < .001 for each 3-way institutional comparison]). Data linkage identified 16% of patients who were treated in 2 health care systems and who, despite comparable prognostic factors, received far more intensive treatment than others. By integrating complementary data from EMRs and population-based registries, a more comprehensive understanding of breast cancer care and factors that drive treatment use was obtained. © 2013

When Good Evidence Is Not Enough: The Role of Context in Bowel Cancer Screening Policy in New Zealand

ERIC Educational Resources Information Center

Flitcroft, Kathy L.; Gillespie, James A.; Carter, Stacy M.; Trevena, Lyndal J.; Salkeld, Glenn P.

2011-01-01

Bowel cancer is a serious health problem in developed countries. Australia, the United Kingdom (UK) and New Zealand (NZ) reviewed the same randomised controlled trial evidence on the benefits and harms of population-based bowel cancer screening. Yet only NZ, with the highest age standardised rate of bowel cancer mortality, decided against…

An overview of New Zealand's trauma system.

PubMed

Paice, Rhondda

2007-01-01

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

Ethnic disparities in breast cancer survival in New Zealand: which factors contribute?

PubMed

Tin Tin, Sandar; Elwood, J Mark; Brown, Charis; Sarfati, Diana; Campbell, Ian; Scott, Nina; Ramsaroop, Reena; Seneviratne, Sanjeewa; Harvey, Vernon; Lawrenson, Ross

2018-01-08

New Zealand has major ethnic disparities in breast cancer survival with Māori (indigenous people) and Pacific women (immigrants or descended from immigrants from Pacific Islands) faring much worse than other ethnic groups. This paper identified underlying factors and assessed their relative contribution to this risk differential. This study involved all women who were diagnosed with primary invasive breast cancer in two health regions, covering about 40% of the national population, between January 2000 and June 2014. Māori and Pacific patients were compared with other ethnic groups in terms of demographics, mode of diagnosis, disease factors and treatment factors. Cox regression modelling was performed with stepwise adjustments, and hazards of excess mortality from breast cancer for Māori and Pacific patients were assessed. Of the 13,657 patients who were included in this analysis, 1281 (9.4%) were Māori, and 897 (6.6%) were Pacific women. Compared to other ethnic groups, they were younger, more likely to reside in deprived neighbourhoods and to have co-morbidities, and less likely to be diagnosed through screening and with early stage cancer, to be treated in a private care facility, to receive timely cancer treatment, and to receive breast conserving surgery. They had a higher risk of excess mortality from breast cancer (age and year of diagnosis adjusted hazard ratio: 1.76; 95% CI: 1.51-2.04 for Māori and 1.97; 95% CI: 1.67-2.32 for Pacific women), of which 75% and 99% respectively were explained by baseline differences. The most important contributor was late stage at diagnosis. Other contributors included neighbourhood deprivation, mode of diagnosis, type of health care facility where primary cancer treatment was undertaken and type of loco-regional therapy. Late diagnosis, deprivation and differential access to and quality of cancer care services were the key contributors to ethnic disparities in breast cancer survival in New Zealand. Our findings

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

PubMed

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

2016-06-01

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

Facilitating enrollment in a Cancer Registry through modified consent procedures: a pilot study.

PubMed

Mazanec, Susan; Daly, Barbara; Meropol, Neal J; Step, Mary

2012-12-01

Research registries are increasingly important in medical research and are essential to the mission of cancer centers. However, designing enrollment and data collection procedures that are consistent with ethical norms and regulatory requirements yet are efficient and cost effective is a major challenge. Current standard consent forms can be a barrier to enrollment because of their length, multiple components, and technical language. We pilot tested an IRB-approved registry booklet and simplified one-page, tiered consent form, allowing for choice of extent of participation. The booklet was mailed to patients with breast cancer as part of their routine information packet prior to the first clinic appointment. A research nurse met with 27 patients at initial treatment to review the booklet, answer questions, obtain informed consent, and collect quality of life data. The consent rate was 78% with 21 patients enrolling in the study. Twelve of the 21 patients (57%) did not read the booklet prior to the visit. The 9 patients (43%) who had read the booklet prior to arrival found it easy to understand. The multi-stage, simplified consent process and data collection were acceptable to these patients and readily integrated into clinical operations. An easy-to-read registry booklet may be an effective guide for discussion, but in-person consent procedures and further testing of the approach are required.

Cancer incidence and incidence rates in Japan in 2009: a study of 32 population-based cancer registries for the Monitoring of Cancer Incidence in Japan (MCIJ) project.

PubMed

Hori, Megumi; Matsuda, Tomohiro; Shibata, Akiko; Katanoda, Kota; Sobue, Tomotaka; Nishimoto, Hiroshi

2015-09-01

The Japan Cancer Surveillance Research Group aimed to estimate the cancer incidence in Japan in 2009 based on data collected from 32 of 37 population-based cancer registries, as part of the Monitoring of Cancer Incidence in Japan (MCIJ) project. The incidence of only primary invasive cancer in Japan for 2009 was estimated to be 775 601. Stomach cancer and breast cancer were the leading types of cancer in males and females, respectively. © The Author 2015. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

Uganda experience-Using cost assessment of an established registry to project resources required to expand cancer registration.

PubMed

Wabinga, Henry; Subramanian, Sujha; Nambooze, Sarah; Amulen, Phoebe Mary; Edwards, Patrick; Joseph, Rachael; Ogwang, Martin; Okongo, Francis; Parkin, D Maxwell; Tangka, Florence

2016-12-01

The objectives of this study are (1) to estimate the cost of operating the Kampala Cancer Registry (KCR) and (2) to use cost data from the KCR to project the resource needs and cost of expanding and sustaining cancer registration in Uganda, focusing on the recently established Gulu Cancer Registry (GCR) in rural Northern Uganda. We used Centers for Disease Control and Prevention's (CDC's) International Registry Costing Tool (IntRegCosting Tool) to estimate the KCR's activity-based cost for 2014. We grouped the registry activities into fixed cost, variable core cost, and variable other cost activities. After a comparison KCR and GCR characteristics, we used the cost of the KCR to project the likely ongoing costs for the new GCR. The KCR incurred 42% of its expenditures in fixed cost activities, 40% for variable core cost activities, and the remaining 18% for variable other cost activities. The total cost per case registered was 28,201 Ugandan shillings (approximately US $10 in 2014) to collect and report cases using a combination of passive and active cancer data collection approaches. The GCR performs only active data collection, and covers a much larger area, but serves a smaller population compared to the KCR. After identifying many differences between KCR and GCR that could potentially affect the cost of registration, our best estimate is that the GCR, though newer and in a rural area, should require fewer resources than the KCR to sustain operations as a stand-alone entity. The optimal structure of the GCR needs to be determined in the future. Copyright © 2016 Elsevier Ltd. All rights reserved.

Cancer Incidence in Saudi Arabia: 2012 Data from the Saudi Cancer Registry

PubMed Central

Bazarbashi, Shouki; Eid, Haya Al; Minguet, Joan

2017-01-01

Background: In order to most appropriately allocate healthcare and research funding for cancer, it is important to have accurate population-based incidence data. The Saudi Cancer Registry (SCR) provides such information, covering the time period from 1994 to the present day. The current report concerns an overview of cancer incidence statistics for Saudi Arabia in 2012. Methods: The SCR collects data from healthcare facilities throughout the Kingdom of Saudi Arabia. All newly diagnosed cases of cancer are recorded, with information on site and histology. For the present report, age-standardised and age-specific incidence rates (ASR, AIR, respectively) were calculated, with attention to gender-specific and regional differences. Results: The total number of incident cases of cancer identified by the SCR in 2012 was 14,336, with 6,791 (47.5%) among males and 7,545 (52.6%) among females. Of this total, 11,034 cases (76.9%) occurred in patients of Saudi origin. For Saudi males, the overall ASR (inc. all cancer sites) was 78.1 per 100,000 people, while that for females was 86.7. Incidence varied by region, with the Eastern region and Riyadh displaying the highest ASRs for both males and females, and Hail and Jazan displaying the lowest. Incidence varied by gender, with colorectal cancer (13.3%), non-Hodgkin lymphoma (NHL; 8.4%), and leukaemia (8.2%) being the most common types in males, and breast (25.8%), thyroid (11.7%), and colorectal cancers (9.3%) being the most common in females. Conclusions: This analysis of cancer incidence in Saudi Arabia demonstrated significant differences according to gender, age, and region of the Kingdom. The data should help ensure the most appropriate allocation of resources, with the aim of minimising the healthcare burden associated with cancer. PMID:28952273

Cancer Incidence in Saudi Arabia: 2012 Data from the Saudi Cancer Registry

PubMed

Bazarbashi, Shouki; Al Eid, Haya; Minguet, Joan

2017-09-27

Background: In order to most appropriately allocate healthcare and research funding for cancer, it is important to have accurate population-based incidence data. The Saudi Cancer Registry (SCR) provides such information, covering the time period from 1994 to the present day. The current report concerns an overview of cancer incidence statistics for Saudi Arabia in 2012. Methods: The SCR collects data from healthcare facilities throughout the Kingdom of Saudi Arabia. All newly diagnosed cases of cancer are recorded, with information on site and histology. For the present report, age-standardised and age-specific incidence rates (ASR, AIR, respectively) were calculated, with attention to gender-specific and regional differences. Results: The total number of incident cases of cancer identified by the SCR in 2012 was 14,336, with 6,791 (47.5%) among males and 7,545 (52.6%) among females. Of this total, 11,034 cases (76.9%) occurred in patients of Saudi origin. For Saudi males, the overall ASR (inc. all cancer sites) was 78.1 per 100,000 people, while that for females was 86.7. Incidence varied by region, with the Eastern region and Riyadh displaying the highest ASRs for both males and females, and Hail and Jazan displaying the lowest. Incidence varied by gender, with colorectal cancer (13.3%), non-Hodgkin lymphoma (NHL; 8.4%), and leukaemia (8.2%) being the most common types in males, and breast (25.8%), thyroid (11.7%), and colorectal cancers (9.3%) being the most common in females. Conclusions: This analysis of cancer incidence in Saudi Arabia demonstrated significant differences according to gender, age, and region of the Kingdom. The data should help ensure the most appropriate allocation of resources, with the aim of minimising the healthcare burden associated with cancer. Creative Commons Attribution License

Distribution of HPV genotypes in women with cervical cancer in Auckland, New Zealand; a review of 50 specimens between 2000-2006.

PubMed

Williamson, Deborah; Nagappan, Radhika; Sirikonda, Rao; Rahnama, Fahimeh; Thomas, Stephen; Lovell-Smith, Margaret; Croxson, Margaret

2011-02-01

In New Zealand, around two hundred women are diagnosed with cervical cancer annually, with approximately seventy deaths from cervical cancer per year. Our aim was to determine the distribution of oncogenic HPV genotypes in biopsy specimens from women with diagnosed cervical cancers in the Auckland region of New Zealand between 2000-2006. Confirmed cases of cervical carcinoma were identified from the local pathology register, and representative tissue samples were taken from these blocks. Sections were deparaffinised, and DNA was extracted according to standard protocols. Samples were subject to PCR amplification using L1 consensus primer sets MY09/11 and GP5/6. Further type-specific amplification was performed on positive samples, using an in-house primer sequence based on target sequences within the E6 gene. Remaining samples were typed by a Linear Array Assay, or by DNA sequencing. HPV DNA was detected in 100% of cases. In 49/50 samples, the HPV genotype was identified, with a total of 14 different HPV genotypes detectable. Together HPV-16 and 18 were found in 41/49 cases (83.6%) either singly or in combination. Our findings suggest that the distribution of HPV genotypes in New Zealand is similar to that of other geographic areas. Ongoing surveillance is warranted to ensure appropriate genotype selection for prophylactic HPV vaccinations. © 2010 The Authors. Australian and New Zealand Journal of Obstetrics and Gynaecology © 2010 The Royal Australian and New Zealand College of Obstetricians and Gynaecologists.

Automated Extraction and Classification of Cancer Stage Mentions fromUnstructured Text Fields in a Central Cancer Registry

PubMed Central

AAlAbdulsalam, Abdulrahman K.; Garvin, Jennifer H.; Redd, Andrew; Carter, Marjorie E.; Sweeny, Carol; Meystre, Stephane M.

2018-01-01

Cancer stage is one of the most important prognostic parameters in most cancer subtypes. The American Joint Com-mittee on Cancer (AJCC) specifies criteria for staging each cancer type based on tumor characteristics (T), lymph node involvement (N), and tumor metastasis (M) known as TNM staging system. Information related to cancer stage is typically recorded in clinical narrative text notes and other informal means of communication in the Electronic Health Record (EHR). As a result, human chart-abstractors (known as certified tumor registrars) have to search through volu-minous amounts of text to extract accurate stage information and resolve discordance between different data sources. This study proposes novel applications of natural language processing and machine learning to automatically extract and classify TNM stage mentions from records at the Utah Cancer Registry. Our results indicate that TNM stages can be extracted and classified automatically with high accuracy (extraction sensitivity: 95.5%–98.4% and classification sensitivity: 83.5%–87%). PMID:29888032

Automated Extraction and Classification of Cancer Stage Mentions fromUnstructured Text Fields in a Central Cancer Registry.

PubMed

AAlAbdulsalam, Abdulrahman K; Garvin, Jennifer H; Redd, Andrew; Carter, Marjorie E; Sweeny, Carol; Meystre, Stephane M

2018-01-01

Cancer stage is one of the most important prognostic parameters in most cancer subtypes. The American Joint Com-mittee on Cancer (AJCC) specifies criteria for staging each cancer type based on tumor characteristics (T), lymph node involvement (N), and tumor metastasis (M) known as TNM staging system. Information related to cancer stage is typically recorded in clinical narrative text notes and other informal means of communication in the Electronic Health Record (EHR). As a result, human chart-abstractors (known as certified tumor registrars) have to search through volu-minous amounts of text to extract accurate stage information and resolve discordance between different data sources. This study proposes novel applications of natural language processing and machine learning to automatically extract and classify TNM stage mentions from records at the Utah Cancer Registry. Our results indicate that TNM stages can be extracted and classified automatically with high accuracy (extraction sensitivity: 95.5%-98.4% and classification sensitivity: 83.5%-87%).

Monitoring the impact of human papillomavirus vaccines on high-grade pre-invasive cervical lesions: designing a framework of linked immunization information system and cancer registry data in Michigan.

PubMed

Potter, Rachel C; Flagg, Elaine W; Datta, S Deblina; Saraiya, Mona; Copeland, Glenn

2015-03-10

State immunization and cancer registries contain data that, if linked, could be used to monitor the impact of human papillomavirus (HPV) vaccine on cervical cancer and precancer. Michigan is uniquely positioned to examine these outcomes using two population-based resources: the state-wide cancer registry and immunization information system (IIS). We assessed the feasibility of identifying females in the IIS who had continuous Michigan residence and linking them to the cancer registry. We considered continuous residence necessary for future studies of vaccine impact to avoid misclassifying those who may have been immunized while residing out-of-state and whose immunization therefore may not have been reported in Michigan. We identified females with 1976-1996 birthdates in the IIS and used probabilistic linkage software to match them with Michigan birth records. A stratified random sample of IIS-birth matches was provided to a commercial locator service to identify females with continuous Michigan residence. Cervical carcinoma in situ cases diagnosed in 2006 among females aged 10 through 30 years were also matched with the birth records; cancer registry-birth matches were merged with the IIS-birth matches using the birth record identifier. Overall, 68% of the 1274,282 IIS and 61% of the 1358 cancer registry records could be matched with birth records. Among the sample of IIS-birth matches, most (86%) were continuous residents. Seventy percent or more of cancer registry-birth matches merged with IIS-birth matches for cases born after 1984. This is the first effort in the U.S. to show that linking records across IIS and cancer registries is practical and reasonably efficient. The increasing proportion of matches between the registries and live birth file with birth year, and the use of population-based data, strengthen the utility of this approach. Future steps include use of this method to examine incidence of cervical cancer precursors in HPV immunization

Two Suspected Worksite or Occupational Cancer Clusters Investigated Using the Cancer Data Registry and Multiple Primary Standardized Incidence Ratios in SEER *Stat-Idaho, 2013-2014.

PubMed

Rosenthal, Mariana; Johnson, Christopher J; Scoppa, Steve; Carter, Kris

2016-01-01

Investigations of suspected cancer clusters are resource intensive and rarely identify true clusters: among 428 publicly reported US investigations during 1990-2011, only 1 etiologic cluster was identified. In 2013, the Cancer Data Registry of Idaho (CDRI) was contacted regarding a suspected cancer cluster at a worksite (Cluster A) and among an occupational cohort (Cluster B). We investigated to determine whether these were true clusters. We derived investigation cohorts for Cluster A from facility-provided employee records and for Cluster B from professional licensing records. We used Registry PlusTM Link Plus to conduct probabilistic linkage of cohort members to the CDRI registry and completed matching through manual review by using LexisNexis®, Accurint®, and the Social Security Death Index. We calculated standardized incidence ratios (SIR) using the MP-SIR session type in SEER*Stat and Idaho and US referent populations. For Cluster A, we identified 34 cancer cases during 9,689 person-years; compared with Idaho and US rates, 95 percent CIs for SIRs included 1.0 for 24 of 24 primary site categories. For Cluster B, we identified 78 cancer cases during 15,154 person-years; compared with Idaho rates, 95 percent CI for SIRs included 1.0 for 23 of 24 primary site categories and was less than 1.0 for lung and bronchus cancers, and compared with US rates, 95 percent CI for SIRs included 1.0 for 22 of 24 primary site categories and was less than 1.0 for lung and bronchus and colorectal cancers. We identified no statistically significant excess in cancer incidence in either cohort. SEER*Stat's MP-SIR is an efficient tool for performing SIR assessments, a Centers for Disease Control and Prevention/Council of State and Territorial Epidemiologists-recommended step when investigating suspected cancer clusters.

Cancer surveillance in northern Africa, and central and western Asia: challenges and strategies in support of developing cancer registries.

PubMed

Znaor, Ariana; Eser, Sultan; Anton-Culver, Hoda; Fadhil, Ibtihal; Ryzhov, Anton; Silverman, Barbara G; Bendahou, Karima; Demetriou, Anna; Nimri, Omar; Yakut, Cankut; Bray, Freddie

2018-02-01

The Global Initiative for Cancer Registry Development partnership, led by the International Agency for Research on Cancer (IARC), was established in response to an overwhelming need for high-quality cancer incidence data from low-income and middle-income countries. The IARC Regional Hub for cancer registration in North Africa, Central and West Asia was founded in 2013 to support capacity building for cancer registration in each of the countries in this region. In this Series paper, we advocate the necessity for tailored approaches to cancer registration given the rapidly changing cancer landscape for this region, and the challenges faced at a national level in developing data systems to help support this process given present disparities in resources and health infrastructure. In addition, we provide an overview of the status of cancer surveillance and activities country-by-country, documenting tailored approaches that are informing local cancer-control policy, and potentially curbing the growing cancer burden across the region. Copyright © 2018 Elsevier Ltd. All rights reserved.

Cancer registries in Europe—going forward is the only option

PubMed Central

Forsea, Ana-Maria

2016-01-01

Cancer registries (CR) are the fundamental source of objective cancer data, and thus are indispensable for the evaluation of the cancer burden and for design of effective cancer control plans. Their potential roles spread far beyond epidemiological research, from the exploration of the causes of cancer to health economics, from the evaluation of mass screening programmes to monitoring the quality and outcomes of health services, from addressing the inequalities in access to healthcare, to patients’ quality of life analyses, from treatment safety to the development of biomarkers. In Europe, cancer registration is challenged by significant disparities in the quality and coverage of CRs, by insufficient harmonisation and comparability of procedures and data, by heterogeneous legislation that limits CR’s abilities for networking, collaboration, and participation in research. These arise against the background of large variations in economical, regulatory, social, and cultural national contexts. Important steps have been taken at European Union (EU)-level in recent years towards mapping and understanding these challenges, identifying best practices and formulating sensible recommendations, and creating the policy frameworks and the tools for cooperation and information sharing. Yet, as cancer has now become the second cause of death in Europe, one third of the population still lacks quality cancer registration, mostly in the regions with lowest resources and health status. It is therefore imperative that the efforts to support the development of CRs continue, and that the wealth of knowledge and vision acquired in this area is transformed into action. PMID:27350787

Cancer survival among children of Turkish descent in Germany 1980–2005: a registry-based analysis

PubMed Central

Spix, Claudia; Spallek, Jacob; Kaatsch, Peter; Razum, Oliver; Zeeb, Hajo

2008-01-01

Background Little is known about the effect of migrant status on childhood cancer survival. We studied cancer survival among children of Turkish descent in the German Cancer Childhood Registry, one of the largest childhood cancer registries worldwide. Methods We identified children of Turkish descent among cancer cases using a name-based approach. We compared 5-year survival probabilities of Turkish and other children in three time periods of diagnosis (1980–87, 1988–95, 1996–2005) using the Kaplan-Meier method and log-rank tests. Results The 5-year survival probability for all cancers among 1774 cases of Turkish descent (4.76% of all 37.259 cases) was 76.9% compared to 77.6% in the comparison group (all other cases; p = 0.15). We found no age- or sex-specific survival differences (p-values between p = 0.18 and p = 0.90). For the period 1980–87, the 5-year survival probability among Turkish children with lymphoid leukaemia was significantly lower (62% versus 75.8%; p < 0.0001), this remains unexplained. For more recently diagnosed leukaemias, we saw no survival differences for Turkish and non-Turkish children. Conclusion Our results suggest that nowadays Turkish migrant status has no bearing on the outcome of childhood cancer therapies in Germany. The inclusion of currently more than 95% of all childhood cancer cases in standardised treatment protocols is likely to contribute to this finding. PMID:19040749

Representativeness of two sampling procedures for an internet intervention targeting cancer-related distress: a comparison of convenience and registry samples.

PubMed

Owen, Jason E; Bantum, Erin O'Carroll; Criswell, Kevin; Bazzo, Julie; Gorlick, Amanda; Stanton, Annette L

2014-08-01

Internet interventions often rely on convenience sampling, yet convenience samples may differ in important ways from systematic recruitment approaches. The purpose of this study was to evaluate potential demographic, medical, and psychosocial differences between Internet-recruited and registry-recruited cancer survivors in an Internet-based intervention. Participants were recruited from a cancer registry (n = 80) and via broad Internet outreach efforts (n = 160). Participants completed a set of self-report questionnaires, and both samples were compared to a population-based sample of cancer survivors (n = 5,150). The Internet sample was younger, better educated, more likely to be female, had longer time since diagnosis, and had more advanced stage of disease (p's < .001), and the registry-sample was over-represented by men and those with prostate or other cancer types (p's < .001). The Internet sample also exhibited lower quality of life and social support and greater mood disturbance (p's < .001). Understanding how convenience and systematic samples differ has important implications for external validity and potential for dissemination of Internet-based interventions.

Asian ethnicity and breast cancer subtypes: a study from the California Cancer Registry.

PubMed

Telli, Melinda L; Chang, Ellen T; Kurian, Allison W; Keegan, Theresa H M; McClure, Laura A; Lichtensztajn, Daphne; Ford, James M; Gomez, Scarlett L

2011-06-01

The distribution of breast cancer molecular subtypes has been shown to vary by race/ethnicity, highlighting the importance of host factors in breast tumor biology. We undertook the current analysis to determine population-based distributions of breast cancer subtypes among six ethnic Asian groups in California. We defined immunohistochemical (IHC) surrogates for each breast cancer subtype among Chinese, Japanese, Filipina, Korean, Vietnamese, and South Asian patients diagnosed with incident, primary, invasive breast cancer between 2002 and 2007 in the California Cancer Registry as: hormone receptor-positive (HR+)/HER2- [estrogen receptor-positive (ER+) and/or progesterone receptor-positive (PR+), human epidermal growth factor receptor 2-negative (HER2-)], triple-negative (ER-, PR-, and HER2-), and HER2-positive (ER±, PR±, and HER2+). We calculated frequencies of breast cancer subtypes among Asian ethnic groups and evaluated their associations with clinical and demographic factors. Complete IHC data were available for 8,140 Asian women. Compared to non-Hispanic White women, Korean [odds ratio (OR) = 1.8, 95% confidence interval (CI) = 1.5-2.2], Filipina (OR = 1.3, 95% CI = 1.2-1.5), Vietnamese (OR = 1.3, 95% CI = 1.1-1.6), and Chinese (OR = 1.1, 95% CI = 1.0-1.3) women had a significantly increased risk of being diagnosed with HER2-positive breast cancer subtypes after adjusting for age, stage, grade, socioeconomic status, histology, diagnosis year, nativity, and hospital ownership status. We report a significant ethnic disparity in HER2-positive breast cancer in a large population-based cohort enriched for Asian-Americans. Given the poor prognosis and high treatment costs of HER2-positive breast cancer, our results have implications for healthcare resource utilization, cancer biology, and clinical care.

Automated Cancer Registry Notifications: Validation of a Medical Text Analytics System for Identifying Patients with Cancer from a State-Wide Pathology Repository

PubMed Central

Nguyen, Anthony N; Moore, Julie; O'Dwyer, John; Philpot, Shoni

2016-01-01

The paper assesses the utility of Medtex on automating Cancer Registry notifications from narrative histology and cytology reports from the Queensland state-wide pathology information system. A corpus of 45.3 million pathology HL7 messages (including 119,581 histology and cytology reports) from a Queensland pathology repository for the year of 2009 was analysed by Medtex for cancer notification. Reports analysed by Medtex were consolidated at a patient level and compared against patients with notifiable cancers from the Queensland Oncology Repository (QOR). A stratified random sample of 1,000 patients was manually reviewed by a cancer clinical coder to analyse agreements and discrepancies. Sensitivity of 96.5% (95% confidence interval: 94.5-97.8%), specificity of 96.5% (95.3-97.4%) and positive predictive value of 83.7% (79.6-86.8%) were achieved for identifying cancer notifiable patients. Medtex achieved high sensitivity and specificity across the breadth of cancers, report types, pathology laboratories and pathologists throughout the State of Queensland. The high sensitivity also resulted in the identification of cancer patients that were not found in the QOR. High sensitivity was at the expense of positive predictive value; however, these cases may be considered as lower priority to Cancer Registries as they can be quickly reviewed. Error analysis revealed that system errors tended to be tumour stream dependent. Medtex is proving to be a promising medical text analytic system. High value cancer information can be generated through intelligent data classification and extraction on large volumes of unstructured pathology reports. PMID:28269893

Automated Cancer Registry Notifications: Validation of a Medical Text Analytics System for Identifying Patients with Cancer from a State-Wide Pathology Repository.

PubMed

Nguyen, Anthony N; Moore, Julie; O'Dwyer, John; Philpot, Shoni

2016-01-01

The paper assesses the utility of Medtex on automating Cancer Registry notifications from narrative histology and cytology reports from the Queensland state-wide pathology information system. A corpus of 45.3 million pathology HL7 messages (including 119,581 histology and cytology reports) from a Queensland pathology repository for the year of 2009 was analysed by Medtex for cancer notification. Reports analysed by Medtex were consolidated at a patient level and compared against patients with notifiable cancers from the Queensland Oncology Repository (QOR). A stratified random sample of 1,000 patients was manually reviewed by a cancer clinical coder to analyse agreements and discrepancies. Sensitivity of 96.5% (95% confidence interval: 94.5-97.8%), specificity of 96.5% (95.3-97.4%) and positive predictive value of 83.7% (79.6-86.8%) were achieved for identifying cancer notifiable patients. Medtex achieved high sensitivity and specificity across the breadth of cancers, report types, pathology laboratories and pathologists throughout the State of Queensland. The high sensitivity also resulted in the identification of cancer patients that were not found in the QOR. High sensitivity was at the expense of positive predictive value; however, these cases may be considered as lower priority to Cancer Registries as they can be quickly reviewed. Error analysis revealed that system errors tended to be tumour stream dependent. Medtex is proving to be a promising medical text analytic system. High value cancer information can be generated through intelligent data classification and extraction on large volumes of unstructured pathology reports.

Colon Cancer Family Registry: an international resource for studies of the genetic epidemiology of colon cancer.

PubMed

Newcomb, Polly A; Baron, John; Cotterchio, Michelle; Gallinger, Steve; Grove, John; Haile, Robert; Hall, David; Hopper, John L; Jass, Jeremy; Le Marchand, Loïc; Limburg, Paul; Lindor, Noralane; Potter, John D; Templeton, Allyson S; Thibodeau, Steve; Seminara, Daniela

2007-11-01

Family studies have served as a cornerstone of genetic research on colorectal cancer. The Colorectal Cancer Family Registry (Colon CFR) is an international consortium of six centers in North America and Australia formed as a resource to support studies on the etiology, prevention, and clinical management of colorectal cancer. Differences in design and sampling schemes ensures a resource that covers the continuum of disease risk. Two separate recruitment strategies identified colorectal cancer cases: population-based (incident case probands identified by cancer registries; all six centers) and clinic-based (families with multiple cases of colorectal cancer presenting at cancer family clinics; three centers). At this time, the Colon CFR is in year 10 with the second phase of enrollment nearly complete. In phase I recruitment (1998-2002), population-based sampling ranged from all incident cases of colorectal cancer to a subsample based on age at diagnosis and/or family cancer history. During phase II (2002-2007), population-based recruitment targeted cases diagnosed before the age of 50 years are more likely attributable to genetic factors. Standardized protocols were used to collect information regarding family cancer history and colorectal cancer risk factors, and biospecimens were obtained to assess microsatellite instability (MSI) status, expression of mismatch repair proteins, and other molecular and genetic processes. Of the 8,369 case probands enrolled to date, 2,602 reported having one or more colorectal cancer-affected relatives and 799 met the Amsterdam I criteria for Lynch syndrome. A large number of affected (1,324) and unaffected (19,816) relatives were enrolled, as were population-based (4,108) and spouse (983) controls. To date, 91% of case probands provided blood (or, for a few, buccal cell) samples and 75% provided tumor tissue. For a selected sample of high-risk subjects, lymphocytes have been immortalized. Nearly 600 case probands had more than two

Initial results of the oesophageal and gastric cancer registry from the Comunidad Valenciana.

PubMed

Escrig, Javier; Mingol, Fernando; Martí, Roberto; Puche, José; Trullenque, Ramón; Barreras, José Antonio; Asencio, Francisco; Aguiló, Javier; Navarro, José Manuel; Alberich, Carmen; Salas, Dolores; Lacueva, Francisco Javier

2017-10-01

To evaluate the initial results of the oesophagogastric cancer registry developed for the Sociedad Valenciana de Cirugía and the Health Department of the Comunidad Valenciana (Spain). Fourteen of the 24 public hospitals belonging to the Comunidad Valenciana participated. All patients with diagnosis of oesophageal or gastric carcinomas operated from January 2013 to December 2014 were evaluated. Demographic, clinical and pathological data were analysed. Four hundred and thirty-four patients (120 oesophageal carcinomas and 314 gastric carcinomas) were included. Only two hospitals operated more than 10 patients with oesophageal cancer per year. Transthoracic oesophaguectomy was the most frequent approach (84.2%) in tumours localized within the oesophagus. A total gastrectomy was performed in 50.9% patients with gastroesophageal junction (GOJ) carcinomas. Postoperative 30-day and 90-day mortality were 8% and 11.6% in oesophageal carcinoma and 5.9 and 8.6% in gastric carcinoma. Before surgery, middle oesophagus carcinomas were treated mostly (76,5%) with chemoradiotherapy. On the contrary, lower oesophagus and GOJ carcinomas were treated preferably with chemotherapy alone (45.5 and 53.4%). Any neoadjuvant treatment was administered to 73.6% of gastric cancer patients. Half patients with oesophageal carcinoma or gastric carcinoma received no adjuvant treatment. This registry revealed that half patients with oesophageal cancer were operated in hospitals with less than 10 cases per year at the Comunidad Valenciana. Also, it detected capacity improvement for some clinical outcomes of oesophageal and gastric carcinomas. Copyright © 2017 AEC. Publicado por Elsevier España, S.L.U. All rights reserved.

Medicines access programs to cancer medicines in Australia and New Zealand: An exploratory study.

PubMed

Grover, Piyush; Babar, Zaheer-Ud-Din; Oehmen, Raoul; Vitry, Agnes

2018-03-01

Medicines Access Programs (MAP) offer access to publicly unfunded medicines at the discretion of pharmaceutical companies. Limited literature is available on their extent and scope in Australia and New Zealand. This study aims to identify MAPs for cancer medicines that were operational in 2014-15 in Australia and New Zealand and describe their characteristics. A preliminary list of MAPs was sent to hospital pharmacists in Australia and New Zealand to validate and collect further information. Pharmaceutical companies were contacted directly to provide information regarding MAPs offered. Key stakeholders were interviewed to identify issues with MAPs. Fifty-one MAPs were identified covering a range of indications. The majority of MAPs were provided free of charge to the patient for medicines that were registered or in the process of being registered but were not funded. Variability in the number of MAPs across institutions and characteristics was observed. Australia offered more MAPs than New Zealand. Only two of 17 pharmaceutical companies contacted agreed to provide information on their MAPs. Eight stakeholder interviews were conducted. This identified that while MAPs are widely operational there is lack of clinical monitoring, inequity to access, operational issues and lack of transparency. Our results suggest a need for a standardised and mandated policy to mitigate issues with MAPs. Copyright © 2017 Elsevier B.V. All rights reserved.

Cancer by industry: analysis of a population-based cancer registry with an emphasis on blue-collar workers.

PubMed

Hall, N E; Rosenman, K D

1991-01-01

This paper uses information on occupation and industry routinely collected in a state-based cancer registry to assess potential associations between work place exposures and cancer incidence. Industry-specific proportional cancer incidence ratios (PCIR) were calculated by race and sex for all individuals and for white males with blue-collar occupations. Expected numbers of cancers were derived both from cancers occurring among all occupations and just among blue-collar occupations. This latter analysis was done as a control for differences in the prevalence of life-style habits between blue- and white-collar workers. Increased lung cancer PCIR were seen in most industries previously reported to be associated with lung cancer risk. The effects of socioeconomic status on these results are discussed. Other results include an increased ratio of melanoma in blue-collar white male rubber and plastic product workers, an increased ratio of non-Hodgkin's lymphomas in motor vehicle manufacture workers, and an increased PCIR of chronic lymphocytic leukemia in general construction workers. Uterine cancer was increased in proportion in white females for a number of industries including rubber and plastic product manufacture, apparel manufacture, and electrical equipment manufacture.

The registry case finding engine: an automated tool to identify cancer cases from unstructured, free-text pathology reports and clinical notes.

PubMed

Hanauer, David A; Miela, Gretchen; Chinnaiyan, Arul M; Chang, Alfred E; Blayney, Douglas W

2007-11-01

The American College of Surgeons mandates the maintenance of a cancer registry for hospitals seeking accreditation. At the University of Michigan Health System, more than 90% of all registry patients are identified by manual review, a method common to many institutions. We hypothesized that an automated computer system could accurately perform this time- and labor-intensive task. We created a tool to automatically scan free-text medical documents for terms relevant to cancer. We developed custom-made lists containing approximately 2,500 terms and phrases and 800 SNOMED codes. Text is processed by the Case Finding Engine (CaFE), and relevant terms are highlighted for review by a registrar and used to populate the registry database. We tested our system by comparing results from the CaFE to those by trained registrars who read through 2,200 pathology reports and marked relevant cases for the registry. The clinical documentation (eg, electronic chart notes) of an additional 476 patients was also reviewed by registrars and compared with the automated process by the CaFE. For pathology reports, the sensitivity for automated case identification was 100%, but specificity was 85.0%. For clinical documentation, sensitivity was 100% and specificity was 73.7%. Types of errors made by the CaFE were categorized to direct additional improvements. Use of the CaFE has resulted in a considerable increase in the number of cases added to the registry each month. The system has been well accepted by our registrars. CaFE can improve the accuracy and efficiency of tumor registry personnel and helps ensure that cancer cases are not overlooked.

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

PubMed

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

2015-05-01

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

The long-term financial consequences of breast cancer: a Danish registry-based cohort study.

PubMed

Jensen, Laura Schärfe; Overgaard, Charlotte; Bøggild, Henrik; Garne, Jens Peter; Lund, Thomas; Overvad, Kim; Fonager, Kirsten

2017-10-30

A breast cancer diagnosis affects an individual's affiliation to labour market, but the long-term consequences of breast cancer on income in a Danish setting have not been examined. The present study investigated whether breast cancer affected future income among Danish women that participated in the work force. We also examined the roles of sociodemographic factors and prior psychiatric medical treatment. This registry-based cohort study was based on information retrieved from linked Danish nationwide registries. We compared the incomes of 13,101 women (aged 30-59 years) diagnosed with breast cancer (exposed) to those of 60,819 women without breast cancer (unexposed). Changes in income were examined during a 10-year follow-up; for each follow-up year, we calculated the mean annual income and the relative change compared to the income earned one year prior to diagnosis. Expected changes in Danish female income, according to calendar year and age, were estimated based on information from Statistics Denmark. For exposed and unexposed groups, the observed income changes were dichotomized to those above and those below the expected change in income in the Danish female population. We examined the impact of breast cancer on income each year of follow-up with logistic regression models. Analyses were stratified according to educational level, marital status, and prior psychiatric medical treatment. Breast cancer had a temporary negative effect on income. The effect was largest during the first three years after diagnosis; thereafter, the gap narrowed between exposed and unexposed cohorts. The odds ratio for an increase in income in the cancer cohort compared to the cancer-free cohort was 0.81 (95% CI 0.77-0.84) after three years. After seven years, no significant difference was observed between cohorts. Stratified analyses demonstrated that the negative effect of breast cancer on income lasted longest among women with high educational levels. Being single or having

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

PubMed

Joshy, Grace; Simmons, David

2006-06-02

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

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

PubMed Central

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

2015-01-01

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

The association between mammographic calcifications and breast cancer prognostic factors in a population-based registry cohort.

PubMed

Nyante, Sarah J; Lee, Sheila S; Benefield, Thad S; Hoots, Tiffany N; Henderson, Louise M

2017-01-01

Mammographic calcifications can be a marker of malignancy, but their association with prognosis is less well established. In the current study, the authors examined the relationship between calcifications and breast cancer prognostic factors in the population-based Carolina Mammography Registry. The current study included 8472 invasive breast cancers diagnosed in the Carolina Mammography Registry between 1996 and 2011 for which information regarding calcifications occurring within 2 years of diagnosis was reported. Calcification-specific Breast Imaging Reporting and Data System (BI-RADS) assessments were reported prospectively by a radiologist. Tumor characteristic data were obtained from the North Carolina Central Cancer Registry and/or pathology reports. Multivariable-adjusted associations between the presence of calcifications in the breast affected by cancer and tumor characteristics were estimated using logistic regression. Statistical tests were 2-sided. The presence of calcifications was found to be positively associated with tumors that were high grade (vs low grade: odds ratio [OR], 1.43; 95% confidence interval [95% CI], 1.10-1.88) or had an in situ component (vs without: OR, 2.15; 95% CI, 1.81-2.55). Calcifications were found to be inversely associated with hormone receptor-negative status (vs positive status: OR, 0.73; 95% CI, 0.57-0.93), size >35 mm (vs ≤8 mm: OR, 0.47; 95% CI, 0.37-0.61), and lobular tumors (vs ductal: OR, 0.39; 95% CI, 0.22-0.69). The association between the presence of calcifications and an in situ component was limited to BI-RADS category 4 and 5 calcifications and was absent for BI-RADS category 2 or 3 calcifications (P for heterogeneity <.01). The association with tumor size was found to be strongest for BI-RADS categories 3 and 4 (P for heterogeneity <.01). Calcifications were found to be associated with both unfavorable (high grade) and favorable (small size, hormone receptor positivity) prognostic factors

Socio-economic inequalities in the incidence of four common cancers: a population-based registry study.

PubMed

Tweed, E J; Allardice, G M; McLoone, P; Morrison, D S

2018-01-01

To investigate the relationship between socio-economic circumstances and cancer incidence in Scotland in recent years. Population-based study using cancer registry data. Data on incident cases of colorectal, lung, female breast, and prostate cancer diagnosed between 2001 and 2012 were obtained from a population-based cancer registry covering a population of approximately 2.5 million people in the West of Scotland. Socio-economic circumstances were assessed based on postcode of residence at diagnosis, using the Scottish Index of Multiple Deprivation (SIMD). For each cancer, crude and age-standardised incidence rates were calculated by quintile of SIMD score, and the number of excess cases associated with socio-economic deprivation was estimated. 93,866 cases met inclusion criteria, comprising 21,114 colorectal, 31,761 lung, 23,757 female breast, and 15,314 prostate cancers. Between 2001 and 2006, there was no consistent association between socio-economic circumstances and colorectal cancer incidence, but 2006-2012 saw an emerging deprivation gradient in both sexes. The incidence rate ratio (IRR) for colorectal cancer between most deprived and least deprived increased from 1.03 (95% confidence interval [CI] 0.91-1.16) to 1.24 (95% CI 1.11-1.39) during the study period. The incidence of lung cancer showed the strongest relationship with socio-economic circumstances, with inequalities widening across the study period among women from IRR 2.66 (95% CI 2.33-3.05) to 2.91 (95% CI 2.54-3.33) in 2001-03 and 2010-12, respectively. Breast and prostate cancer showed an inverse relationship with socio-economic circumstances, with lower incidence among people living in more deprived areas. Significant socio-economic inequalities remain in cancer incidence in the West of Scotland, and in some cases are increasing. In particular, this study has identified an emerging, previously unreported, socio-economic gradient in colorectal cancer incidence among women as well as men. Actions

Clinical stages in patients with primary and subsequent cancers based on the czech cancer registry 1976-2005.

PubMed

Geryk, Edvard; Stampach, Radim; Dítě, Petr; Kozel, Jiří; Horváth, Teodor; Kubíček, Petr

2013-01-01

Of 1,486,984 new cancers registered in the Czech Cancer Registry in 1976-2005, 290,312 (19.5%) were multiple malignant neoplasms (MMNs), of which there were 65,292 primary and 89,796 subsequent cases in men and 59,970 primary and 75,254 subsequent cases in women. The duplicities were higher in women, and the triplicities and others (3-6 MMNs) were higher in men. The most frequent diagnoses were the primary cancers of skin, gastrointestinal and urinary tract, male genital organs, respiratory tract in men, and cancers of skin, breast, female genital organs, and gastrointestinal tract in women. The analysis of the early and advanced clinical stages shows that the number of subsequent advanced stages increased after primary advanced stages. Their time-age-space distributions visualized maps of MMNs in 14 Czech regions. These results support the improvement of algorithms of dispensary care for the early detection of the subsequent neoplasms.

Integrating cancer survivors' experiences into UK cancer registries: design and development of the ePOCS system (electronic Patient-reported Outcomes from Cancer Survivors)

PubMed Central

Ashley, L; Jones, H; Thomas, J; Forman, D; Newsham, A; Morris, E; Johnson, O; Velikova, G; Wright, P

2011-01-01

Background: Understanding the psychosocial challenges of cancer survivorship, and identifying which patients experience ongoing difficulties, is a key priority. The ePOCS (electronic patient-reported outcomes from cancer survivors) project aims to develop and evaluate a cost-efficient, UK-scalable electronic system for collecting patient-reported outcome measures (PROMs), at regular post-diagnostic timepoints, and linking these with clinical data in cancer registries. Methods: A multidisciplinary team developed the system using agile methods. Design entailed process mapping the system's constituent parts, data flows and involved human activities, and undertaking usability testing. Informatics specialists built new technical components, including a web-based questionnaire tool and tracking database, and established component-connecting data flows. Development challenges were overcome, including patient usability and data linkage and security. Results: We have developed a system in which PROMs are completed online, using a secure questionnaire administration tool, accessed via a public-facing website, and the responses are linked and stored with clinical registry data. Patient monitoring and communications are semiautomated via a tracker database, and patient correspondence is primarily Email-based. The system is currently honed for clinician-led hospital-based patient recruitment. Conclusions: A feasibility test study is underway. Although there are possible challenges to sustaining and scaling up ePOCS, the system has potential to support UK epidemiological PROMs collection and clinical data linkage. PMID:22048035

Educational differences in incidence of cancer in Lithuania, 2001-2009: evidence from census-linked cancer registry data.

PubMed

Smailyte, Giedre; Jasilionis, Domantas; Vincerzevskiene, Ieva; Krilaviciute, Agne; Ambrozaitiene, Dalia; Stankuniene, Vladislava; Shkolnikov, Vladimir M

2015-05-01

This study used population-based census-linked cancer incidence data to identify patterns of educational differentials in the risk of cancer by detailed sites of cancer in Lithuania. The study is based on the linkage between all records of the 2001 population census, all records from the Lithuanian Cancer Registry (cancer incidence), and all death and emigration records from Statistics Lithuania for the period between 6 April 2001 and 31 December 2009. The study population (cohort) includes all permanent residents of Lithuania aged 30-74 years on the day of the census (6 April 2001). The study found that cancers of the lip, mouth, and pharynx, esophagus, stomach, larynx, urinary bladder, pancreas, and lung for men and cancers of the cervix uteri, lung, and colon for women show a statistically significant inverse educational gradient with excess incidence in the lowest educational group. At the same time, a reversed cancer risk gradient with the highest incidence for the higher education group was observed for thyroid cancer, melanoma, nonmelanoma skin cancers, and non-Hodgkin lymphomas. This group also includes prostate cancer, kidney cancer, and multiple myeloma for men and cancer of the pancreas, breast cancer, cancer of the colon, and cancer of the uterus for women. The associations between education and cancer incidence observed in this study reflect the concordance between social status and lifestyle-related risk factors for cancer. Cancer awareness in society has also contributed toward the observed higher risk of cancer, which is usually promoted more by patients with higher education.

Validity of Race, Ethnicity, and National Origin in Population-based Cancer Registries and Rapid Case Ascertainment Enhanced With a Spanish Surname List.

PubMed

Clarke, Lisa C; Rull, Rudolph P; Ayanian, John Z; Boer, Robert; Deapen, Dennis; West, Dee W; Kahn, Katherine L

2016-01-01

Accurate information regarding race, ethnicity, and national origins is critical for identifying disparities in the cancer burden. To examine the use of a Spanish surname list to improve the quality of race-related information obtained from rapid case ascertainment (RCA) and to estimate the accuracy of race-related information obtained from cancer registry records collected by routine reporting. Self-reported survey responses of 3954 participants from California enrolled in the Cancer Care Outcomes Research and Surveillance Consortium. Sensitivity, specificity, positive predictive value, and percent agreement. We used logistic regression to identify predictors of underreporting and overreporting of a race/ethnicity. Use of the Spanish surname list increased the sensitivity of RCA for Latino ethnicity from 37% to 83%. Sensitivity for cancer registry records collected by routine reporting was ≥95% for whites, blacks, and Asians, and specificity was high for all groups (86%-100%). However, patterns of misclassification by race/ethnicity were found that could lead to biased cancer statistics for specific race/ethnicities. Discordance between self-reported and registry-reported race/ethnicity was more likely for women, Latinos, and Asians. Methods to improve race and ethnicity data, such as using Spanish surnames in RCA and instituting data collection guidelines for hospitals, are needed to ensure minorities are accurately represented in clinical and epidemiological research.

Inverse Association Between Cancer and Dementia: A Population-based Registry Study in Taiwan.

PubMed

Lin, Hsiu-Li; Lin, Hsiu-Chen; Tseng, Yuan-Fu; Chen, Shih-Chang; Hsu, Chien-Yeh

2016-01-01

Dementia and cancer are 2 common diseases in the elderly. This retrospective cohort study used a population-based insurance claim dataset, merged with a cancer registry, to test whether risk reduction of cancers occurs at various primary sites after diagnosis of dementia. The study included a cohort of 3282 patients who were first diagnosed with dementia between 2001 and 2002. A control cohort consisted of 13,128 subjects matched for age, sex, and year of enrollment. The site of cancer and duration between the diagnosis of dementia and cancer were analyzed. Among the dementia cases, 169 patients (5.2%) were diagnosed with cancer during a median observation period of 40 months. In the control group, 976 subjects (7.4%) were diagnosed with cancer, during a median observation period of 46 months. During a 7-year follow-up period, the adjusted hazard ratio for cancer among dementia patients was 0.77 (95% confidence interval, 0.65-0.91), and significantly lower for colon (0.54, 0.29-0.99) and prostate cancers (0.44, 0.20-0.98). This study showed an inverse association between cancer and dementia. Further studies focusing on colon and prostate cancers may help elucidate the underlying mechanism and expand the therapeutic strategies.

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.

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

PubMed

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

2009-02-02

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

Cannabis use and risk of lung cancer: a case-control study.

PubMed

Aldington, S; Harwood, M; Cox, B; Weatherall, M; Beckert, L; Hansell, A; Pritchard, A; Robinson, G; Beasley, R

2008-02-01

The aim of the present study was to determine the risk of lung cancer associated with cannabis smoking. A case-control study of lung cancer in adults Zealand. Cases were identified from the New Zealand Cancer Registry and hospital databases. Controls were randomly selected from the electoral roll, with frequency matching to cases in 5-yr age groups and district health boards. Interviewer-administered questionnaires were used to assess possible risk factors, including cannabis use. The relative risk of lung cancer associated with cannabis smoking was estimated by logistic regression. In total, 79 cases of lung cancer and 324 controls were included in the study. The risk of lung cancer increased 8% (95% confidence interval (CI) 2-15) for each joint-yr of cannabis smoking, after adjustment for confounding variables including cigarette smoking, and 7% (95% CI 5-9) for each pack-yr of cigarette smoking, after adjustment for confounding variables including cannabis smoking. The highest tertile of cannabis use was associated with an increased risk of lung cancer (relative risk 5.7 (95% CI 1.5-21.6)), after adjustment for confounding variables including cigarette smoking. In conclusion, the results of the present study indicate that long-term cannabis use increases the risk of lung cancer in young adults.

Lung, Breast, and Prostate Cancer Patients with Unknown Ethnicity in US Department of Defense Cancer Registry Data: Comparisons to Patients with Known Ethnicity.

PubMed

Lin, Jie; Kamamia, Christine; Shao, Stephanie; Brown, Derek; Rockswold, Paul D; Butts, Elizabeth; Shriver, Craig D; Zhu, Kangmin

2017-01-01

INTRODUCTION: Colorectal cancer (CRC) is one of the leading causes of cancer death for both men and women in the United States. Several factors can increase one’s risk of CRC, including a personal or family history of CRC, a diagnosis or family history of a hereditary colon cancer syndrome, or a diagnosis of chronic inflammatory bowel disease. The purpose of this project was to create a colorectal cancer registry (Co-Care) for individuals with a personal or family history of CRC, and those with disorders of the colon or rectum that are associated with an increased risk for developing CRC. METHODS: To be eligible for the registry, patients either had a personal or family history of CRC, a diagnosis or family history of Lynch syndrome, familial adenomatous polyposis, or a diagnosis of Crohn’s colitis or ulcerative colitis with dysplasia. Participants were recruited after seeing their gastroenterologist or genetic counselor, or after undergoing a full or partial colectomy at Mount Sinai Hospital in New York City. Eligible patients who agreed to participate were interviewed by a member of the research staff and asked a wide range of questions pertaining to CRC risk. RESULTS: A total of 224 patients were enrolled in the registry. Participants are mostly white, born in the United States, and married, with a bachelor’s or graduate degree, reporting an annual household income of $100,000 or more. The largest portion have a family history of CRC (27.2%), and almost half of participants are of Jewish descent (46.2%) and have undergone full or partial colectomy (48.2%). More than half of participants have neither received genetic counseling (54.5%) nor undergone genetic testing (59.7%). Only 3.6% report that they currently smoke cigarettes, and 41.1% consume alcohol at least once per week. Lastly, 18.3%, 10.3%, and 27.7% of participants report that they currently take aspirin, folic acid/folate pills or tablets, or calcium pills/tablets, respectively. CONCLUSIONS: This

Focal cryotherapy for localized prostate cancer: a report from the national Cryo On-Line Database (COLD) Registry.

PubMed

Ward, John F; Jones, J Stephen

2012-06-01

Study Type - Therapy (cohort) Level of Evidence 2b What's known on the subject? and What does the study add? Selective destruction of targeted prostate tissue is now technically feasible. Much has been theorized but little is known about the proper patient selection or treatment outcomes to determine if this organ preserving approach to prostate cancer has merit for further study and diffusion into wider practice. Herein we present the largest retrospective registry report of men treated with sub-total prostate cryotherapy in order to begin to understand how this treatment is being applied despite the paucity of data. •  To identify recent trends in focal cryotherapy from a prospectively maintained treatment registry. •  To describe treatment outcomes after uncontrolled application of focally ablative techniques within community practice. •  We conducted an analysis of the COLD Registry to identify patients treated with partial gland prostate cryoablation between 1997 and 2007. •  Preoperative characteristics and postoperative cancer-specific and functional outcomes were assembled for analysis. •  The COLD Registry contained information for 5853 patients and focal cryotherapy was the codified procedure in 1160 patients (19.8%). •  A dramatic increase in focal treatments was observed, from 46 in 1999 to 567 in 2005 (P < 0.01). •  The biochemical recurrence-free rate (ASTRO definition) at 36 months was 75.7%. •  Prostate biopsy, performed in 164/1160 of patients (14.1%), was positive in 43 (26.3%) of those suspected of cancer recurrence, but in only 3.7% (43/1160) of treated patients. •  Urinary continence (defined as use of 0 pads) was 98.4%. Maintenance of spontaneous erections was 58.1%. Prolonged urinary retention (>30 days) occurred in six (1.1%) patients. Rectourethral fistula was observed in one (0.1%) patient. •  Focal cryoablation is increasingly used for selected patients with prostate cancer. •  Oncological

Assessing race and ethnicity data quality across cancer registries and EMRs in two hospitals.

PubMed

Lee, Simon J Craddock; Grobe, James E; Tiro, Jasmin A

2016-05-01

Measurement of patient race/ethnicity in electronic health records is mandated and important for tracking health disparities. Characterize the quality of race/ethnicity data collection efforts. For all cancer patients diagnosed (2007-2010) at two hospitals, we extracted demographic data from five sources: 1) a university hospital cancer registry, 2) a university electronic medical record (EMR), 3) a community hospital cancer registry, 4) a community EMR, and 5) a joint clinical research registry. The patients whose data we examined (N = 17 834) contributed 41 025 entries (range: 2-5 per patient across sources), and the source comparisons generated 1-10 unique pairs per patient. We used generalized estimating equations, chi-squares tests, and kappas estimates to assess data availability and agreement. Compared to sex and insurance status, race/ethnicity information was significantly less likely to be available (χ(2 )> 8043, P < .001), with variation across sources (χ(2 )> 10 589, P < .001). The university EMR had a high prevalence of "Unknown" values. Aggregate kappa estimates across the sources was 0.45 (95% confidence interval, 0.45-0.45; N = 31 276 unique pairs), but improved in sensitivity analyses that excluded the university EMR source (κ = 0.89). Race/ethnicity data were in complete agreement for only 6988 patients (39.2%). Pairs with a "Black" data value in one of the sources had the highest agreement (95.3%), whereas pairs with an "Other" value exhibited the lowest agreement across sources (11.1%). Our findings suggest that high-quality race/ethnicity data are attainable. Many of the "errors" in race/ethnicity data are caused by missing or "Unknown" data values. To facilitate transparent reporting of healthcare delivery outcomes by race/ethnicity, healthcare systems need to monitor and enforce race/ethnicity data collection standards. © The Author 2015. Published by Oxford University Press on behalf of the American

Conditional relative survival of oral cavity cancer: Based on Korean Central Cancer Registry.

PubMed

Min, Seung-Ki; Choi, Sung Weon; Ha, Johyun; Park, Joo Yong; Won, Young-Joo; Jung, Kyu-Won

2017-09-01

Conditional relative survival (CRS) describes the survival chance of patients who have already survived for a certain period of time after diagnosis and treatment of cancer. Thus, CRS can complement the conventional 5-year relative survival, which does not consider the time patients have survived after their diagnosis. This study aimed to assess the 5-year CRS among Korean patients with oral cancer and the related risk factors. We identified 15,329 oral cavity cancer cases with a diagnosis between 1993 and 2013 in the Korea Central Cancer Registry. The CRS rates were calculated according to sex, age, subsite, histology, and stage at diagnosis. The 5-year relative survival was 57.2%, and further analysis revealed that the 5-year CRS increased during the first 2years and reached a plateau at 86.5% after 5years of survival. Women had better 5-year CRS than men after 5years of survival (90.0% vs. 83.3%), and ≤45-year-old patients had better 5-year CRS than older patient groups (93.3% vs. 86.4% or 86.7%). Subsite-specific differences in 5-year CRS were observed (tongue: 91% vs. mouth floor: 73.9%). Squamous cell carcinoma had a CRS of 87.3%, compared to 85.5% for other histological types. Localized disease had a CRS of 95.7%, compared to 87.3% for regional metastasis. Patients with oral cavity cancer exhibited increasing CRS rates, which varied according to sex, age, subsite, histology, and stage at diagnosis. Thus, CRS analysis provides a more detailed perspective regarding survival during the years after the initial diagnosis or treatment. Copyright © 2017 Elsevier Ltd. All rights reserved.

Thyrotropin suppression and disease progression in patients with differentiated thyroid cancer: results from the National Thyroid Cancer Treatment Cooperative Registry.

PubMed

Cooper, D S; Specker, B; Ho, M; Sperling, M; Ladenson, P W; Ross, D S; Ain, K B; Bigos, S T; Brierley, J D; Haugen, B R; Klein, I; Robbins, J; Sherman, S I; Taylor, T; Maxon, H R

1998-09-01

The ideal therapy for differentiated thyroid cancer is uncertain. Although thyroid hormone treatment is pivotal, the degree of thyrotropin (TSH) suppression that is required to prevent recurrences has not been studied in detail. We have examined the relation of TSH suppression to baseline disease characteristics and to the likelihood of disease progression in a cohort of thyroid cancer patients who have been followed in a multicenter thyroid cancer registry that was established in 1986. The present study describes 617 patients with papillary and 66 patients with follicular thyroid cancer followed annually for a median of 4.5 years (range 1-8.6 years). Cancer staging was assessed using a staging scheme developed and validated by the registry. Cancer status was defined as no residual disease; progressive disease at any follow-up time; or death from thyroid cancer. A mean TSH score was calculated for each patient by averaging all available TSH determinations, where 1 = undetectable TSH; 2 = subnormal TSH; 3 = normal TSH; and 4 = elevated TSH. Patients were also grouped by their TSH scores: group 1: mean TSH score 1.0-1.99; group 2: mean TSH score 2.0-2.99; group 3: mean TSH score 3.0-4.0. The degree of TSH suppression did not differ between papillary and follicular thyroid cancer patients. However, TSH suppression was greater in papillary cancer patients who were initially classified as being at higher risk for recurrence. This was not the case for follicular cancer patients, where TSH suppression was similar for all patients. For all stages of papillary cancer, a Cox proportional hazards model showed that disease stage, patient age, and radioiodine therapy all predicted disease progression, but TSH score category did not. However, TSH score category was an independent predictor of disease progression in high risk patients (p = 0.03), but was no longer significant when radioiodine therapy was included in the model (p = 0.09). There were too few patients with

The natural history of Leydig cell testicular tumours: an analysis of the National Cancer Registry.

PubMed

Nason, G J; Redmond, E J; Considine, S W; Omer, S I; Power, D; Sweeney, P

2018-05-01

Leydig cell tumour (LCT) of the testis is a rare histological subtype of stromal tumours, accounting for 1 to 3% of testicular neoplasms. The natural history of LCT is poorly understood. The aim of this study was to assess the incidence and natural history of Leydig cell tumours (LCT) of the testes. A search of the National Cancer Registry of Ireland database was performed regarding Leydig cell testicular tumours. Recurrence free survival (RFS) and disease-specific survival (DSS) were analysed. Between 1994 and 2013, 2755 new cases of testicular cancer were diagnosed in Ireland. Of these, 22 (0.79%) were Leydig cell tumours. Nineteen were invasive (stage T1) and three were in situ (stage Tis). One patient developed a local recurrence following an organ preserving procedure and underwent a completion orchidectomy 107 days after initial diagnosis. No further treatment was required. There have been no disease-specific deaths. The 1-, 3- and 5-year overall survival (OS) rates were 95.5, 88.2 and 73.3%, respectively. The 5-year disease-specific survival (DSS) was 100% and the 5-year recurrence free survival (RFS) was 93.3%. From the National Cancer Registry, LCT has been shown to be a rare subtype of testicular tumour. Due to the relatively favourable natural history, it may be possible to tailor less aggressive surveillance regimens in these patients.

Pregnancy outcomes in female childhood and adolescent cancer survivors: a linked cancer-birth registry analysis.

PubMed

Mueller, Beth A; Chow, Eric J; Kamineni, Aruna; Daling, Janet R; Fraser, Alison; Wiggins, Charles L; Mineau, Geraldine P; Hamre, Merlin R; Severson, Richard K; Drews-Botsch, Carolyn

2009-10-01

To compare birth outcomes among female survivors of childhood and adolescent cancer who subsequently bear children, relative to those of women without a history of cancer. Retrospective cohort study. Four US regions. Cancer registries identified girls younger than 20 years who were diagnosed as having cancer from 1973 through 2000. Linked birth records identified the first live births after diagnosis (n = 1898). Comparison subjects were selected from birth records (n = 14 278). Survivors of genital tract carcinomas underwent separate analysis. Cancer diagnosis at younger than 20 years. Infant low birth weight, preterm delivery, sex ratio, malformations, mortality, and delivery method, and maternal diabetes, anemia, and preeclampsia. Infants born to childhood cancer survivors were more likely to be preterm (relative risk [RR], 1.54; 95% confidence interval [CI], 1.30-1.83) and to weigh less than 2500 g (1.31; 1.10-1.57). For the offspring of genital tract carcinoma survivors, RRs were 1.33 (95% CI, 1.13-1.56) and 1.29 (1.10-1.53), respectively. There were no increased risks of malformations, infant death, or altered sex ratio, suggesting no increased germ cell mutagenicity. In exploratory analysis, bone cancer survivors had an increased risk of diabetes (RR, 4.92; 95% CI, 1.60-15.13), and anemia was more common among brain tumor survivors (3.05; 1.16-7.98) and childhood cancer survivors whose initial treatment was chemotherapy only (2.45; 1.16-5.17). Infants born to female survivors of childhood and adolescent cancer were not at increased risk of malformations or death. Increased occurrence of preterm delivery and low birth weight suggest that close monitoring is warranted. Increased diabetes and anemia among subgroups have not been reported, suggesting areas for study.

Breast Cancer Biology and Ethnic Disparities in Breast Cancer Mortality in New Zealand: A Cohort Study

PubMed Central

Seneviratne, Sanjeewa; Lawrenson, Ross; Scott, Nina; Kim, Boa; Shirley, Rachel; Campbell, Ian

2015-01-01

Introduction Indigenous Māori women have a 60% higher breast cancer mortality rate compared with European women in New Zealand. We investigated differences in cancer biological characteristics and their impact on breast cancer mortality disparity between Māori and NZ European women. Materials and Methods Data on 2849 women with primary invasive breast cancers diagnosed between 1999 and 2012 were extracted from the Waikato Breast Cancer Register. Differences in distribution of cancer biological characteristics between Māori and NZ European women were explored adjusting for age and socioeconomic deprivation in logistic regression models. Impacts of socioeconomic deprivation, stage and cancer biological characteristics on breast cancer mortality disparity between Māori and NZ European women were explored in Cox regression models. Results Compared with NZ European women (n=2304), Māori women (n=429) had significantly higher rates of advanced and higher grade cancers. Māori women also had non-significantly higher rates of ER/PR negative and HER-2 positive breast cancers. Higher odds of advanced stage and higher grade remained significant for Māori after adjusting for age and deprivation. Māori women had almost a 100% higher age and deprivation adjusted breast cancer mortality hazard compared with NZ European women (HR=1.98, 1.55-2.54). Advanced stage and lower proportion of screen detected cancer in Māori explained a greater portion of the excess breast cancer mortality (HR reduction from 1.98 to 1.38), while the additional contribution through biological differences were minimal (HR reduction from 1.38 to 1.35). Conclusions More advanced cancer stage at diagnosis has the greatest impact while differences in biological characteristics appear to be a minor contributor for inequities in breast cancer mortality between Māori and NZ European women. Strategies aimed at reducing breast cancer mortality in Māori should focus on earlier diagnosis, which will likely

Evaluating Early Case Capture of Pediatric Cancers in Seven Central Cancer Registries in the United States, 2013

PubMed Central

Neri, Antonio; Rohan, Elizabeth; Clerkin, Castine; Underwood, J. Michael; Ryerson, A. Blythe; Stewart, Sherri L.

2016-01-01

Objective Cancer is the second-leading cause of death in children, but incidence data are not available until two years after diagnosis, thereby delaying data dissemination and research. An early case capture (ECC) surveillance program was piloted in seven state cancer registries to register pediatric cancer cases within 30 days of diagnosis. We sought to determine the quality of ECC data and understand pilot implementation. Methods We used quantitative and qualitative methods to evaluate ECC. We assessed data quality by comparing demographic and clinical characteristics from the initial ECC submission to a resubmission of ECC pilot data and to the most recent year of routinely collected cancer data for each state individually and in aggregate. We conducted telephone focus groups with registry staff to determine ECC practices and difficulties in August and September 2013. Interviews were recorded, transcribed, and coded to identify themes. Results Comparing ECC initial submissions with submissions for all states, ECC data were nationally representative for age (9.7 vs. 9.9 years) and sex (673 of 1,324 [50.9%] vs. 42,609 of 80,547 [52.9%] male cases), but not for primary site (472 of 1,324 [35.7%] vs. 27,547 of 80,547 [34.2%] leukemia/lymphoma cases), behavior (1,219 of 1,324 [92.1%] vs. 71,525 of 80,547 [88.8%] malignant cases), race/ethnicity (781 of 1,324 [59.0%] vs. 64,518 of 80,547 [80.1%] white cases), or diagnostic confirmation (1,233 of 1,324 [93.2%] vs. 73,217 of 80,547 [90.9%] microscopically confirmed cases). When comparing initial ECC data with resubmission data, differences were seen in race/ethnicity (808 of 1,324 [61.1%] vs. 1,425 of 1,921 [74.2%] white cases), primary site (475 of 1,324 [35.9%] vs. 670 of 1,921 [34.9%] leukemia/lymphoma cases), and behavior (1,215 of 1,324 [91.8%] vs. 1,717 of 1,921 [89.4%] malignant cases). Common themes from focus group analysis included implementation challenges and facilitators, benefits of ECC, and utility of

Evaluating Early Case Capture of Pediatric Cancers in Seven Central Cancer Registries in the United States, 2013.

PubMed

Puckett, Mary; Neri, Antonio; Rohan, Elizabeth; Clerkin, Castine; Underwood, J Michael; Ryerson, A Blythe; Stewart, Sherri L

2016-01-01

Cancer is the second-leading cause of death in children, but incidence data are not available until two years after diagnosis, thereby delaying data dissemination and research. An early case capture (ECC) surveillance program was piloted in seven state cancer registries to register pediatric cancer cases within 30 days of diagnosis. We sought to determine the quality of ECC data and understand pilot implementation. We used quantitative and qualitative methods to evaluate ECC. We assessed data quality by comparing demographic and clinical characteristics from the initial ECC submission to a resubmission of ECC pilot data and to the most recent year of routinely collected cancer data for each state individually and in aggregate. We conducted telephone focus groups with registry staff to determine ECC practices and difficulties in August and September 2013. Interviews were recorded, transcribed, and coded to identify themes. Comparing ECC initial submissions with submissions for all states, ECC data were nationally representative for age (9.7 vs. 9.9 years) and sex (673 of 1,324 [50.9%] vs. 42,609 of 80,547 [52.9%] male cases), but not for primary site (472 of 1,324 [35.7%] vs. 27,547 of 80,547 [34.2%] leukemia/lymphoma cases), behavior (1,219 of 1,324 [92.1%] vs. 71,525 of 80,547 [88.8%] malignant cases), race/ethnicity (781 of 1,324 [59.0%] vs. 64,518 of 80,547 [80.1%] white cases), or diagnostic confirmation (1,233 of 1,324 [93.2%] vs. 73,217 of 80,547 [90.9%] microscopically confirmed cases). When comparing initial ECC data with resubmission data, differences were seen in race/ethnicity (808 of 1,324 [61.1%] vs. 1,425 of 1,921 [74.2%] white cases), primary site (475 of 1,324 [35.9%] vs. 670 of 1,921 [34.9%] leukemia/lymphoma cases), and behavior (1,215 of 1,324 [91.8%] vs. 1,717 of 1,921 [89.4%] malignant cases). Common themes from focus group analysis included implementation challenges and facilitators, benefits of ECC, and utility of ECC data. ECC provided data

Coding completeness and quality of relative survival-related variables in the National Program of Cancer Registries Cancer Surveillance System, 1995-2008.

PubMed

Wilson, Reda J; O'Neil, M E; Ntekop, E; Zhang, Kevin; Ren, Y

2014-01-01

Calculating accurate estimates of cancer survival is important for various analyses of cancer patient care and prognosis. Current US survival rates are estimated based on data from the National Cancer Institute's (NCI's) Surveillance, Epidemiology, and End RESULTS (SEER) program, covering approximately 28 percent of the US population. The National Program of Cancer Registries (NPCR) covers about 96 percent of the US population. Using a population-based database with greater US population coverage to calculate survival rates at the national, state, and regional levels can further enhance the effective monitoring of cancer patient care and prognosis in the United States. The first step is to establish the coding completeness and coding quality of the NPCR data needed for calculating survival rates and conducting related validation analyses. Using data from the NPCR-Cancer Surveillance System (CSS) from 1995 through 2008, we assessed coding completeness and quality on 26 data elements that are needed to calculate cancer relative survival estimates and conduct related analyses. Data elements evaluated consisted of demographic, follow-up, prognostic, and cancer identification variables. Analyses were performed showing trends of these variables by diagnostic year, state of residence at diagnosis, and cancer site. Mean overall percent coding completeness by each NPCR central cancer registry averaged across all data elements and diagnosis years ranged from 92.3 percent to 100 percent. RESULTS showing the mean percent coding completeness for the relative survival-related variables in NPCR data are presented. All data elements but 1 have a mean coding completeness greater than 90 percent as was the mean completeness by data item group type. Statistically significant differences in coding completeness were found in the ICD revision number, cause of death, vital status, and date of last contact variables when comparing diagnosis years. The majority of data items had a coding

Trends in epidemiology and management of breast cancer in developing Arab countries: a literature and registry analysis.

PubMed

El Saghir, Nagi S; Khalil, Mazen K; Eid, Toufic; El Kinge, Abdul Rahman; Charafeddine, Maya; Geara, Fady; Seoud, Muhieddine; Shamseddine, Ali I

2007-08-01

Registries and research on breast cancer in Arabic and developing countries are limited. We searched PubMed, Medline, WHO and IAEA publications, national, regional, hospital tumor registries and abstracts. We reviewed and analyzed available data on epidemiological trends and management of breast cancer in Arab countries, and compared it to current international standards of early detection, surgery and radiation therapy. Breast cancer constitutes 13-35% of all female cancers. Almost half of patients are below 50 and median age is 49-52 years as compared to 63 in industrialized nations. A recent rise of Age-Standardized Incidence Rates (ASR) is noted. Advanced disease remains very common in Egypt, Tunisia, Saudi Arabia, Syria, Palestinians and others. Mastectomy is still performed in more than 80% of women with breast cancer. There are only 84 radiation therapy centers, 256 radiation oncologists and 473 radiation technologists in all Arab countries, as compared with 1875, 3068 and 5155, respectively, in the USA, which has an equivalent population of about 300 million. Population-based screening is rarely practiced. Results from recent campaigns and studies show a positive impact of clinical breast examination leading to more early diagnosis and breast-conserving surgery. Breast cancer is the most common cancer among women in Arab countries with a young age of around 50 years at presentation. Locally advanced disease is very common and total mastectomy is the most commonly performed surgery. Awareness campaigns and value of clinical breast examination were validated in the Cairo Breast Cancer Screening Trial. More radiation centers and early detection would optimize care and reduce the currently high rate of total mastectomies. Population-based screening in those countries with affluent resources and accessible care should be implemented.

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

Using Israel's National Cancer Registry Database to Track Progress in the War against Cancer: A Challenge for Health Services.

PubMed

Robinson, Eliezer; Silverman, Barbara G; Keinan-Boker, Lital

2017-04-01

The number of cancer survivors has been increasing worldwide and is now approximately 32.6 million and growing. Cancer survivors present a challenge to health care providers because of their higher susceptibility to long-term health outcomes related to their primary disease and treatment. To report on the number of cancer survivors and incident cancer cases in the period 1960-2009 in Israel, in order to provide data on the scope of the challenge Israel's health care funds face. The Israel National Cancer Registry (INCR) database was used to identify new cancer cases diagnosed during the period 1960-2009. Lifetable analysis was used to assess changes in cumulative survival and population prevalence of cancer survivors throughout the 50 year study period. Almost 600,000 invasive cancer cases were diagnosed during the period 1960-2009 (overall absolute survival rate 54%). Within this time period, the number of new patients diagnosed with cancer increased fivefold and that of cancer survivors ninefold. The absolute survival of cancer patients and the prevalence of cancer survivors in the general population significantly increased with time from 34% and 0.5%, respectively (1960-1969), to 62% and 1.9%, respectively (2000-2009). Cumulative absolute survival for 5, 10 and 15 years following diagnosis increased with time as well. The INCR database is useful to assess progress in the war against cancer. The growing numbers of cancer survivors in Israel present a challenge to the national health and social services system.

Thirty-day mortality rate in women with cancer and venous thromboembolism. Findings from the RIETE Registry.

PubMed

Trujillo-Santos, Javier; Casas, José Manuel; Casa, José Manuel; Casado, Ignacio; Samperiz, Angel Luis; Quintavalla, Roberto; Sahuquillo, Joan Carles; Monreal, Manuel

2011-02-01

The influence of the site of cancer on outcome in cancer women with venous thromboembolism (VTE) is poorly understood. Reliable information on its influence might facilitate better use of prevention strategies. We assessed the 30-day outcome in all women with active cancer in the RIETE Registry, trying to identify if differences exist according to the tumor site. Up to May 2010, 2474 women with cancer and acute VTE had been enrolled. The most common sites were the breast (26%), colon (13%), uterus (9.3%), and haematologic (8.6%) cancers. During the 30-day study period, 329 (13%) patients died. Of them, 71 (2.9%) died of pulmonary embolism (PE), 22 (0.9%) died of bleeding. Fatal PE was more common in women with breast, colorectal, lung or pancreatic cancer (59% of the fatal PEs). Fatal bleeding was more frequent in women with colorectal, haematologic, ovarian cancer or carcinoma of unknown origin (55% of fatal bleedings). © 2011 Elsevier Ltd. All rights reserved.

Measuring the effect of improvement in methodological techniques on data collection in the Gharbiah population-based cancer registry in Egypt: Implications for other Low- and Middle-Income Countries.

PubMed

Smith, Brittney L; Ramadan, Mohamed; Corley, Brittany; Hablas, Ahmed; Seifeldein, Ibrahim A; Soliman, Amr S

2015-12-01

The purpose of this study was to describe and quantify procedures and methods that maximized the efficiency of the Gharbiah Cancer Registry (GPCR), the only population-based cancer registry in Egypt. The procedures and measures included a locally-developed software program to translate names from Arabic to English, a new national ID number for demographic and occupational information, and linkage of cancer cases to new electronic mortality records of the Ministry of Health. Data was compiled from the 34,058 cases from the registry for the years 1999-2007. Cases and registry variables about demographic and clinical information were reviewed by year to assess trends associated with each new method or procedure during the study period. The introduction of the name translation software in conjunction with other demographic variables increased the identification of detected duplicates from 23.4% to 78.1%. Use of the national ID increased the proportion of cases with occupation information from 27% to 89%. Records with complete mortality information increased from 18% to 43%. Proportion of cases that came from death certificate only, decreased from 9.8% to 4.7%. Overall, the study revealed that introducing and utilizing local and culture-specific methodological changes, software, and electronic non-cancer databases had a significant impact on data quality and completeness. This study may have translational implications for improving the quality of cancer registries in LMICs considering the emerging advances in electronic databases and utilization of health software and computerization of data. Copyright © 2015 Elsevier Ltd. All rights reserved.

Estimating cancer incidence, prevalence, and the number of cancer patients treated with antitumor therapy in 2015 and 2020 -  analysis of the Czech National Cancer Registry.

PubMed

Dusek, L; Pavlík, T; Májek, O; Büchler, T; Muzik, J; Maluskova, D; Koptíková, J; Bortlicek, Z; Abrahámová, J

2015-01-01

Cancer burden in the Czech population ranks among the highest worldwide, which introduces a strong need for a prospective modelling of cancer incidence and prevalence rates. Moreover, a prediction of number of cancer patients requiring active antitumor therapy is also an important issue. This paper presents the stage-specific predictions of cancer incidence and prevalence, and the stage- and region-specific patients requiring active antitumor therapy for the most common cancer diagnoses in the Czech Republic for years 2015 and 2020. The stage-specific estimates are also presented with regard to the treatment phase as newly diagnosed patients, patients treated for non-terminal recurrence, and patients treated for terminal recurrence. Data of the Czech National Cancer Registry from 1977 to 2011 has been used for the analysis, omitting the records of patients diagnosed as death certificate only or at autopsy. In total, 1,777,775 incidences have been considered for the estimation using a statistical model utilizing solely the population-based cancer registry data. All estimates have been calculated with respect to the changing demographic structure of the Czech population and the clinical stage at diagnosis. Considering year 2011 as the baseline, we predict 89%, 15%, 31% and 32% increase in prostate, colorectal, female breast and lung cancer incidence, respectively, in 2020 resulting in 13,153, 9,368, 8,695, and 8,604 newly dia-g--nosed cancer patients in that year, respectively. Regarding cancer prevalence in 2020, the estimated increase is 140%, 40%, 51%, and 17% for prostate, colorectal, female breast and lung cancer, respectively, meaning that more than 100,000 prevalent female breast cancer patients as well as more than 100,000 prevalent prostate cancer patients are expected in the Czech Republic. The estimated numbers of patients requiring active antitumor therapy for prostate, colorectal, female breast and lung cancer in the Czech Republic in 2020 are 23,652, 14

Hereditary colorectal cancer registries in Canada: report from the Colorectal Cancer Association of Canada consensus meeting; Montreal, Quebec; October 28, 2011

PubMed Central

Rothenmund, H.; Singh, H.; Candas, B.; Chodirker, B.N.; Serfas, K.; Aronson, M.; Holter, S.; Volenik, A.; Green, J.; Dicks, E.; Woods, M.O.; Gilchrist, D.; Gryfe, R.; Cohen, Z.; Foulkes, W.D.

2013-01-01

At a consensus meeting held in Montreal, October 28, 2011, a multidisciplinary group of Canadian experts in the fields of genetics, gastroenterology, surgery, oncology, pathology, and health care services participated in presentation and discussion sessions for the purpose of developing consensus statements pertaining to the development and maintenance of hereditary colorectal cancer registries in Canada. Five statements were approved by all participants. PMID:24155632

Multiple neoplasms among cervical cancer patients in the material of the lower Silesian cancer registry.

PubMed

Izmajłowicz, Barbara; Kornafel, Jan; Błaszczyk, Jerzy

2014-01-01

According to the definition by the International Agency for Research on Cancer (IARC), primary multiple neoplasms are two or more neoplasms of different histopathological build in one organ, or two or more tumors occurring in one patient, regardless of the time of their occurrence (synchronic - up to 6 months, metachronous - after 6 months), coming from an organ or a tissue and not being an infiltration from another neoplasm, a relapse or a metastasis. It was the aim of the study to analyze the frequency of the occurrence of multiple neoplasms among patients suffering from uterine cervix cancer, with a special interest in coexistent neoplasms, the time of their occurrence and total 5-year survivals. The data from the Lower Silesian Cancer Registry concerning the years 1984-2009 formed the material of the present study. 5.3% of all cervix neoplasms occurred as multiple cancers. Cervix neoplasms were 13.4% of multiple neoplasms. On average, cervical cancer occurred as a subsequent cancer in 6 patients yearly (60.7% of the occurrences of cervical cancer were in the period of 5 years following treatment for the first neoplasm). 5-year survival in patients suffering from primarily multiple cervix neoplasms constituted 57% and was convergent with the results for all patients suffering from cervical cancer. Cervical cancer as the first neoplasm occurred in 287 patients, on average in 11 patients annually. In the period of the first 5 years after the treatment of cervical cancer, there were 42.8% occurrences of other cancers. Cervical neoplasms most frequently coexisted with cancers of the breast, lung and large intestine. The frequency of the occurrence of multiple neoplasm among cervical cancer patients is increasing. Most frequently they coexist with other tobacco-related neoplasms, those related to HPV infections and with secondary post-radiation neoplasms. These facts should be taken into consideration during post-treatment observation and when directing diagnostic

The Research Implications of Prostate Specific Antigen Registry Errors: Data from the Veterans Health Administration.

PubMed

Guo, David P; Thomas, I-Chun; Mittakanti, Harsha R; Shelton, Jeremy B; Makarov, Danil V; Skolarus, Ted A; Cooperberg, Mathew R; Sonn, Geoffrey A; Chung, Benjamin I; Brooks, James D; Leppert, John T

2018-04-06

We sought to characterize the effects of prostate specific antigen registry errors on clinical research by comparing cohorts based on cancer registry prostate specific antigen values with those based directly on results in the electronic health record. We defined sample cohorts of men with prostate cancer using data from the VHA (Veterans Health Administration), including those with a prostate specific antigen value less than 4.0, 4.0 to 10.0, 10.0 to 20.0 and 20.0 to 98.0 ng/ml, respectively. We compared the composition of each cohort and overall patient survival when using PSA values from the VACCR (Veteran Affairs Central Cancer Registry) vs the gold standard electronic health record laboratory file results. There was limited agreement among cohorts when defined by cancer registry PSA values vs the laboratory file of the electronic health record. The least agreement of 58% was seen in patients with PSA less than 4.0 ng/ml and greatest agreement of 89% was noted among patients with PSA between 4.0 and 10.0 ng/ml. In each cohort patients assigned to a cohort based only on the cancer registry PSA value had significantly different overall survival when compared with patients assigned based on registry and laboratory file PSA values. Cohorts based exclusively on cancer registry PSA values may have high rates of misclassification that can introduce concerning differences in key characteristics and result in measurable differences in clinical outcomes. Copyright © 2018 American Urological Association Education and Research, Inc. Published by Elsevier Inc. All rights reserved.

Does fear of cancer recurrence differ between cancer types? A study from the population-based PROFILES registry.

PubMed

van de Wal, Marieke; van de Poll-Franse, Lonneke; Prins, Judith; Gielissen, Marieke

2016-07-01

Knowledge of factors associated with fear of cancer recurrence (FCR) may inform intervention development and improve patient care. The aims were (1) to compare FCR severity between cancer types and (2) to identify associations between FCR, demographics, medical characteristics, information provision and health-related quality of life. Cross-sectional data were obtained from the Patient Reported Outcomes Following Initial Treatment and Long-Term Evaluation of Survivorship registry. We included stage I and II survivors diagnosed with melanoma (n = 469), colorectal cancer (n = 861), endometrial cancer (n = 688), thyroid cancer (n = 218), Hodgkin (n = 103) and non-Hodgkin lymphoma (n = 276). Cancer survivors completed questionnaires on FCR (Impact of Cancer scale - Health Worries subscale), satisfaction with information provision (European Organization for Research and Treatment of Cancer, Quality of Life Questionnaire (EORTC-QLQ) INFO25, satisfaction scale) and health-related quality of life (EORTC-QLQ C30, Short Form 36-item). A total of 2615 survivors completed the Impact of Cancer scale - Health Worries subscale. No significant differences in FCR severity were found between any of the cancer types (p = 0.063). A younger age, female gender, stage II disease, a shorter time since diagnosis, scheduled follow-up appointments and comorbidity were associated with higher FCR (p < 0.01). Satisfaction with information provision was negatively correlated with FCR severity (r = -0.16, p < 0.05). Demographic and medical factors accounted for 6% of explained variance in FCR. The full model, also including health-related quality of life, explained 15% and 19%, respectively. Fear of cancer recurrence seems to be a universal concern of cancer survivors rather than a cancer type-specific problem. Gender, age and medical factors were identified as risk factors. Copyright © 2015 John Wiley & Sons, Ltd. Copyright © 2015 John Wiley & Sons, Ltd.

Factors associated with African Americans' enrollment in a national cancer genetics registry.

PubMed

Skinner, C S; Schildkraut, J M; Calingaert, B; Hoyo, C; Crankshaw, S S; Fish, L; Susswein, L; Jasper, C; Reid, L

2008-01-01

This study explored whether reactions to the Cancer Genetics Network (CGN) or CGN enrollment differed by receipt of a standard informational brochure versus a targeted version addressing factors previously associated with African Americans' health behavior decisions and research participation. The 262 participants, identified through tumor registries or clinic contacts, were mailed brochures and completed phone interviews. When asked whether - based on the brochure - they were or were not 'leaning toward' CGN enrollment, about 75% of both standard and targeted groups reported leaning toward. When given the opportunity at the end of the interview, 68% enrolled in the CGN. Trust was strongly related to enrollment. Less education, less satisfaction with cancer care, and individualistic rather than collective orientation were associated with lower trust. Education was also bivariately associated with enrollment, but mediation analysis indicated that the operational mechanism of education's influence on enrollment was through trust. Copyright 2008 S. Karger AG, Basel.

The results of interconnection of the evidence of professional exposure to genotoxic factors (regex) and cancer registry in the Czech Republic.

PubMed

Lehocká, Hana; Závacká, Ivona; Vavrošová, Jana; Janout, Vladimír

2017-03-01

The aim of this study is to analyze the genotoxic risks in the Moravian-Silesian Region in the Czech Republic and assess the significance of genotoxic factors in the etiology of cancer by bringing together the Registry of Occupational Exposure to Genotoxic Factors and the Cancer Registry and compare the rate of detected cancer in persons exposed to genotoxic factors via their work in the Moravian-Silesian Region with the occurrence of cancer in the population of the Czech Republic. The results show: (a) For the monitored group (748 person) for the period 1996-2008, according to gender, was no statistically significant difference in the incidence of oncological diseases compared to the population of the Czech Republic. (b) But statistically significant difference was found in the cases of oncological diseases in groups according to % AB.C. using the Cytogenetic analysis of human peripheral lymphocytes (CAPL). The highest incidence was in the group with a higher incidence of % AB.C. High values of % AB.C. may predict the development of oncological diseases.

Design and implementation of a mobile system for lung cancer patient follow-up in China and initial report of the ongoing patient registry.

PubMed

Ye, Xiangyun; Wei, Jia; Li, Ziming; Niu, Xiaomin; Wang, Jiemin; Chen, Yunqin; Guo, Zongming; Lu, Shun

2017-01-17

Management of lung cancer remains a challenge. Although clinical and biological patient data are crucial for cancer research, these data may be missing from registries and clinical trials. Biobanks provide a source of high-quality biological material for clinical research; however, linking these samples to the corresponding patient and clinical data is technically challenging. We describe the mobile Lung Cancer Care system (mLCCare), a novel tool which integrates biological and clinical patient data into a single resource. mLCCare was developed as a mobile device application (app) and an internet website. Data storage is hosted on cloud servers, with the mobile app and website acting as a front-end to the system. mLCCare also facilitates communication with patients to remind them to take their medication and attend follow-up appointments. Between January 2014 and October 2015, 5,080 patients with lung cancer have been registered with mLCCare. Data validation ensures all the patient information is of consistently high-quality. Patient cohorts can be constructed via user-specified criteria and data exported for statistical analysis by authorized investigators and collaborators. mLCCare forms the basis of establishing an ongoing lung cancer registry and could form the basis of a high-quality multisite patient registry. Integration of mLCCare with SMS messaging and WeChat functionality facilitates communication between physicians and patients. It is hoped that mLCCare will prove to be a powerful and widely used tool that will enhance both research and clinical practice.

Low tobacco-related cancer incidence in offspring of long-lived siblings: a comparison with Danish national cancer registry data.

PubMed

Pedersen, Jacob K; Skytthe, Axel; McGue, Matt; Honig, Lawrence S; Franceschi, Claudio; Kirkwood, Thomas B L; Passarino, Giuseppe; Slagboom, P Eline; Vaupel, James W; Christensen, Kaare

2015-08-01

Familial clustering of longevity is well documented and includes both genetic and other familial factors, but the specific underlying mechanisms are largely unknown. We examined whether low incidence of specific cancers is a mechanism for familial clustering of longevity. The study population of individuals from longevity-enriched families consisted of 3267 offspring from 610 Danish long-lived families defined by two siblings attaining an age of 90 years or more. The offspring of the long-lived siblings were followed from 1968 to 2009. Using high-quality registry data, observed numbers of cancers were compared with expected numbers based on gender-, calendar period-, and age-specific incidence rates in the general population. During the 41-year-follow-up period, a total of 423 cancers occurred in 397 individuals. The standardized incidence ratios (95% confidence interval) for offspring of long-lived individuals were 0.78 (0.70-0.86) for overall cancer; 0.66 (0.56-0.77) for tobacco-related cancer; 0.34 (0.22-0.51) for lung cancer; 0.88 (0.71-1.10) for breast cancer; 0.91 (0.62-1.34) for colon cancer. The low incidence of tobacco-related cancers in long-lived families compared with non-tobacco-related cancers suggests that health behavior plays a central role in lower early cancer incidence in offspring of long-lived siblings in Denmark. Copyright © 2015 Elsevier Inc. All rights reserved.

A new approach to estimate time-to-cure from cancer registries data.

PubMed

Boussari, Olayidé; Romain, Gaëlle; Remontet, Laurent; Bossard, Nadine; Mounier, Morgane; Bouvier, Anne-Marie; Binquet, Christine; Colonna, Marc; Jooste, Valérie

2018-04-01

Cure models have been adapted to net survival context to provide important indicators from population-based cancer data, such as the cure fraction and the time-to-cure. However existing methods for computing time-to-cure suffer from some limitations. Cure models in net survival framework were briefly overviewed and a new definition of time-to-cure was introduced as the time TTC at which P(t), the estimated covariate-specific probability of being cured at a given time t after diagnosis, reaches 0.95. We applied flexible parametric cure models to data of four cancer sites provided by the French network of cancer registries (FRANCIM). Then estimates of the time-to-cure by TTC and by two existing methods were derived and compared. Cure fractions and probabilities P(t) were also computed. Depending on the age group, TTC ranged from to 8 to 10 years for colorectal and pancreatic cancer and was nearly 12 years for breast cancer. In thyroid cancer patients under 55 years at diagnosis, TTC was strikingly 0: the probability of being cured was >0.95 just after diagnosis. This is an interesting result regarding the health insurance premiums of these patients. The estimated values of time-to-cure from the three approaches were close for colorectal cancer only. We propose a new approach, based on estimated covariate-specific probability of being cured, to estimate time-to-cure. Compared to two existing methods, the new approach seems to be more intuitive and natural and less sensitive to the survival time distribution. Copyright © 2018 Elsevier Ltd. All rights reserved.

Evaluation of data quality at the National Cancer Registry of Ukraine.

PubMed

Ryzhov, Anton; Bray, Freddie; Ferlay, Jacques; Fedorenko, Zoya; Goulak, Liudmyla; Gorokh, Yevgeniy; Soumkina, Olena; Znaor, Ariana

2018-04-01

Cancer notification has been mandatory in Ukraine since 1953, with the National Cancer Registry of Ukraine (NCRU) established in 1996. The aim of this study was to provide a comprehensive evaluation of the data quality at the NCRU. Qualitative and semi-quantitative methods were used to assess the comparability, completeness, validity and timeliness of cancer incidence data from the NCRU for the period 2002-2012. Cancer registration procedures at the NCRU are in accordance with international standards and recommendations. Semi-quantitative methods suggested the NCRU's data was reasonably complete, although decreases in age-specific incidence and mortality rates in the elderly indicated some missing cases at older ages. The proportion of microscopically-verified cases increased from 73.6% in 2002 to 82.3% in 2012, with death-certificate-only (DCO) proportions stable at around 0.1% and unknown stage recorded in 9.6% of male and 7.5% of female solid tumours. Timeliness was considered acceptable, with reporting >99% complete within a turn-around time of 15 months. While timely reporting of national data reflects the advantages of a mandatory data collection system, a low DCO% and observed age-specific declines suggest possible underreporting of incidence and mortality data, particularly at older ages. Overall, the evaluation indicates that the data are reasonably comparable and thus may be used to describe the magnitude of the cancer burden in Ukraine. Given its central role in monitoring and evaluation of cancer control activities, ensuring the sustainability of NCRU operations throughout the process of healthcare system reform is of utmost importance. Copyright © 2018 Elsevier Ltd. All rights reserved.

Tumor size and stage of breast cancer in Côte d'Ivoire and Republic of Congo - Results from population-based cancer registries.

PubMed

Islami, Farhad; Lortet-Tieulent, Joannie; Okello, Catherine; Adoubi, Innocent; Mbalawa, Charles Gombé; Ward, Elizabeth M; Parkin, D Maxwell; Jemal, Ahmedin

2015-12-01

Breast cancer is now the leading female cancer in sub-Saharan Africa, but there is relatively little information on breast cancer characteristics from this region. We studied, on a population basis, the size and stage of female breast cancer at diagnosis in Côte d'Ivoire and Republic of Congo. Data on tumor size and stage of breast cancer at diagnosis were collected by population-based cancer registries in Abidjan (the capital of Côte d'Ivoire; 141 cases) and Brazzaville (the capital of Republic of Congo; 139 cases) from a random group of female breast cancer cases that were diagnosed in 2008-2009 using the same protocol. The majority of breast cancers in both countries were advanced cancers. In Côte d'Ivoire, 68% of tumors were ≥5 cm in diameter and 74% of cancers were stage III or IV at diagnosis; the corresponding proportions in Republic of Congo were 63% and 81%. These results underscore the importance of increased awareness about early detection of breast cancer, as well as expansion of the capacity to provide appropriate diagnosis, treatment, and palliative care in sub-Saharan Africa. Copyright © 2015 Elsevier Ltd. All rights reserved.

Matching study to registry data: maintaining data privacy in a study on family based colorectal cancer.

PubMed

Nasseh, Daniel; Engel, Jutta; Mansmann, Ulrich; Tretter, Werner; Stausberg, Jürgen

2014-01-01

Confidentiality of patient data in the field of medical informatics is an important task. Leaked sensitive information within this data can be adverse to and being abused against a patient. Therefore, when working with medical data, appropriate and secure models which serve as guidelines for different applications are needed. Consequently, this work presents a model for performing a privacy preserving record linkage between study and registry data. The model takes into account seven requirements related to data privacy. Furthermore, this model is exemplified with a study on family based colorectal cancer in Germany. The model is very strict and excludes possible violations towards data privacy protection to a reasonable degree. It should be applicable to similar use cases which are in need of a mapping between medical data of a study and a registry database.

ABRAXAS (FAM175A) and Breast Cancer Susceptibility: No Evidence of Association in the Breast Cancer Family Registry.

PubMed

Renault, Anne-Laure; Lesueur, Fabienne; Coulombe, Yan; Gobeil, Stéphane; Soucy, Penny; Hamdi, Yosr; Desjardins, Sylvie; Le Calvez-Kelm, Florence; Vallée, Maxime; Voegele, Catherine; Hopper, John L; Andrulis, Irene L; Southey, Melissa C; John, Esther M; Masson, Jean-Yves; Tavtigian, Sean V; Simard, Jacques

2016-01-01

Approximately half of the familial aggregation of breast cancer remains unexplained. This proportion is less for early-onset disease where familial aggregation is greater, suggesting that other susceptibility genes remain to be discovered. The majority of known breast cancer susceptibility genes are involved in the DNA double-strand break repair pathway. ABRAXAS is involved in this pathway and mutations in this gene impair BRCA1 recruitment to DNA damage foci and increase cell sensitivity to ionizing radiation. Moreover, a recurrent germline mutation was reported in Finnish high-risk breast cancer families. To determine if ABRAXAS could be a breast cancer susceptibility gene in other populations, we conducted a population-based case-control mutation screening study of the coding exons and exon/intron boundaries of ABRAXAS in the Breast Cancer Family Registry. In addition to the common variant p.Asp373Asn, sixteen distinct rare variants were identified. Although no significant difference in allele frequencies between cases and controls was observed for the identified variants, two variants, p.Gly39Val and p.Thr141Ile, were shown to diminish phosphorylation of gamma-H2AX in MCF7 human breast adenocarcinoma cells, an important biomarker of DNA double-strand breaks. Overall, likely damaging or neutral variants were evenly represented among cases and controls suggesting that rare variants in ABRAXAS may explain only a small proportion of hereditary breast cancer.

Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study.

PubMed

Keegan, Theresa H M; Lichtensztajn, Daphne Y; Kato, Ikuko; Kent, Erin E; Wu, Xiao-Cheng; West, Michelle M; Hamilton, Ann S; Zebrack, Brad; Bellizzi, Keith M; Smith, Ashley W

2012-09-01

We described unmet information and service needs of adolescent and young adult (AYA) cancer survivors (15-39 years of age) and identified sociodemographic and health-related factors associated with these unmet needs. We studied 523 AYAs recruited from seven population-based cancer registries, diagnosed with acute lymphocytic leukemia, Hodgkin's lymphoma, non-Hodgkin's lymphoma, germ cell cancer, or sarcoma in 2007-2008. Participants completed surveys a median of 11 months from diagnosis. Multivariable logistic regression analyses were used to estimate associations between unmet (information and service) needs and sociodemographic and health-related factors. More than half of AYAs had unmet information needs relating to their cancer returning and cancer treatments. AYAs needing services, but not receiving them, ranged from 29 % for in-home nursing to 75 % for a support group. The majority of AYAs who needed a pain management expert, physical/occupational therapist, mental health worker, or financial advice on paying for health care did not receive services. In multivariable analyses, older participants, men, participants of non-white race/ethnicity, and participants who reported less than excellent general health or fair/poor quality of care were more likely to report unmet information needs. Factors associated with both unmet service and information needs included physical health or emotional problems interfering with social activities or having ≥3 physical treatment-related symptoms. Recently diagnosed AYA cancer survivors have substantial unmet information needs varying by demographic and health-related factors. We identified subgroups of AYA cancer survivors with high unmet needs that can be targeted for interventions and referrals.

Traditional and Complementary Medicine Use Among Indigenous Cancer Patients in Australia, Canada, New Zealand, and the United States: A Systematic Review.

PubMed

Gall, Alana; Leske, Stuart; Adams, Jon; Matthews, Veronica; Anderson, Kate; Lawler, Sheleigh; Garvey, Gail

2018-05-01

Cancer 'patients' are increasingly using traditional indigenous and complementary medicines (T&CM) alongside conventional medical treatments to both cure and cope with their cancer diagnoses. To date T&CM use among Indigenous cancer patients from Australia, Canada, New Zealand, and the United States has not been systematically reviewed. We systematically searched bibliographic databases to identify original research published between January 2000 and October 2017 regarding T&CM use by Indigenous cancer patients in Australia, Canada, New Zealand, and the United States. Data from records meeting eligibility criteria were extracted and appraised for quality by 2 independent reviewers. Twenty-one journal articles from 18 studies across all 4 countries met our inclusion criteria. T&CM use ranged from 19% to 57.7% (differing across countries). T&CM was mostly used concurrently with conventional cancer treatments to meet their spiritual, emotional, social, and cultural needs; however, bush, traditional, and herbal medicines were used in a minority of cases as an alternative. Our findings highlight the importance of T&CM use to Indigenous cancer patients across these 4 countries; we identified multiple perceived spiritual, emotional and cultural benefits to its use. The patient's perception of their health professional's attitudes toward T&CM in some cases hindered or encouraged the patient's disclosure. Additional research is required to further explore the use and disclosure of T&CM among Indigenous cancer patients to help inform and ensure effective, safe, coordinated care for Indigenous cancer patients that relies on shared open decision making and communication across patients, communities, and providers.

Unmet adolescent and young adult cancer survivors information and service needs: A population-based cancer registry study

PubMed Central

Keegan, Theresa H.M.; Lichtensztajn, Daphne Y.; Kato, Ikuko; Kent, Erin E.; Wu, Xiao-Cheng; West, Michelle M.; Hamilton, Ann S.; Zebrack, Brad; Bellizzi, Keith M.; Smith, Ashley W.

2012-01-01

Purpose We described unmet information and service needs of adolescent and young adult (AYA) cancer survivors (15-39 years of age) and identified sociodemographic and health-related factors associated with these unmet needs. Methods We studied 523 AYAs recruited from 7 population-based cancer registries, diagnosed with acute lymphocytic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, germ cell cancer or sarcoma in 2007-08. Participants completed surveys a median of 11 months from diagnosis. Multivariable logistic regression analyses were used to estimate associations between unmet (information and service) needs and sociodemographic and health-related factors. Results More than half of AYAs had unmet information needs relating to their cancer returning and cancer treatments. AYAs needing services, but not receiving them, ranged from 29% for in-home nursing to 75% for a support group. The majority of AYAs who needed a pain management expert, physical/occupational therapist, mental health worker or financial advice on paying for health care did not receive services. In multivariable analyses, older participants, men, participants of non-White race/ethnicity, and participants who reported less than excellent general health, or fair/poor quality of care were more likely to report unmet information needs. Factors associated with both unmet service and information needs included physical health or emotional problems interfering with social activities or having ≥ 3 physical treatment-related symptoms. Conclusions Recently diagnosed AYA cancer survivors have substantial unmet information needs varying by demographic and health-related factors. Implications for Cancer Survivors We identified subgroups of AYA cancer survivors with high unmet needs that can be targeted for interventions and referrals. PMID:22457219

Cancer epidemiology in the pacific islands - past, present and future.

PubMed

Moore, Malcolm A; Baumann, Francine; Foliaki, Sunia; Goodman, Marc T; Haddock, Robert; Maraka, Roger; Koroivueta, Josefa; Roder, David; Vinit, Thomas; Whippy, Helen J D; Sobue, Tomotaka

2010-01-01

The Pacific Ocean contains approximately 25,000 islands, stretching from Papua New Guinea to Easter Island, populated by mixtures of Melanesians, Micronesians and Polynesians, as well as migrant groups from Asia and Europe. The region encompasses a third of the surface of the earth although it is sparsely populated at a total of around 9 million. With the exception of some of the more populated islands, such as New Zealand and Hawaii, few surveys of chronic diseases have been conducted, but it is increasingly recognized that obesity, diabetes and associated conditions are emerging public health problems and clearly there is a need for cooperation to optimize control. Here we focus on cancer registry and epidemiological findings for Papua New Guinea, the Solomons, Vanuatu, Samoa, New Caledonia, Fiji, Polynesia, French Polynesia, Maori in New Zealand, Native Hawaiians, Micronesia, including Guam, and Aboriginal populations in Australia as assessed by PubMed searches and perusal of the International Agency for Cancer Research descriptive epidemiology database. Overall, the major cancers in males are oral and liver in Papua New Guinea and the Solomon Islands, and lung and prostate elsewhere (Fiji being exceptional in demonstrating a predominance of esophageal cancer), whereas in females it is breast and either cervix or lung, depending largely on whether cervical cancer screening program is active. In certain locations thyroid cancer is also very prevalent in females. The similarities and variation point to advantages for collaborative research to provide the evidence-base for effective cancer control programs in the region.

Cancer Epidemiology in the Pacific Islands - Past, Present and Future

PubMed Central

Moore, Malcolm A; Baumann, Francine; Foliaki, Sunia; Goodman, Marc T; Haddock, Robert; Maraka, Roger; Koroivueta, Josefa; Roder, David; Vinit, Thomas; Whippy, Helen JD; Sobue, Tomotaka

2015-01-01

The Pacific Ocean contains approximately 25,000 islands, stretching from Papua New Guinea to Easter Island, populated by mixtures of Melanesians, Micronesians and Polynesians, as well as migrant groups from Asia and Europe. The region encompasses a third of the surface of the earth although it is sparsely populated at a total of around 9 million. With the exception of some of the more populated islands, such as New Zealand and Hawaii, few surveys of chronic diseases have been conducted, but it is increasingly recognized that obesity, diabetes and associated conditions are emerging public health problems and clearly there is a need for cooperation to optimize control. Here we focus on cancer registry and epidemiological findings for Papua New Guinea, the Solomons, Vanuatu, Samoa, New Caledonia, Fiji, Polynesia, French Polynesia, Maori in New Zealand, Native Hawaiians, Micronesia, including Guam, and Aboriginal populations in Australia as assessed by PubMed searches and perusal of the International Agency for Cancer Research descriptive epidemiology database. Overall, the major cancers in males are oral and liver in Papua New Guinea and the Solomon Islands, and lung and prostate elsewhere (Fiji being exceptional in demonstrating a predominance of esophageal cancer), whereas in females it is breast and either cervix or lung, depending largely on whether cervical cancer screening program is active. In certain locations thyroid cancer is also very prevalent in females. The similarities and variation point to advantages for collaborative research to provide the evidence-base for effective cancer control programs in the region. PMID:20553071

Breast cancer in a multi-ethnic Asian setting: results from the Singapore-Malaysia hospital-based breast cancer registry.

PubMed

Pathy, Nirmala Bhoo; Yip, Cheng Har; Taib, Nur Aishah; Hartman, Mikael; Saxena, Nakul; Iau, Philip; Bulgiba, Awang M; Lee, Soo Chin; Lim, Siew Eng; Wong, John E L; Verkooijen, Helena M

2011-04-01

Two hospital-based breast cancer databases (University Malaya Medical Center, Malaysia [n = 1513] and National University Hospital, Singapore [n = 2545]) were merged into a regional registry of breast cancer patients diagnosed between 1990 and 2007. A review of the data found 51% of patients diagnosed before the age of 50 years. and 72% percent of the women were Chinese followed by Malays (16%), Indians (8%), and other races (4%). Median tumor size at presentation was 26 mm and about 25% of patients presented with TNM stage III or IV disease. Most tumors were of ductal histology (87%). Fifty-seven percent of tumors were estrogen receptor positive and 40% were poorly differentiated. Of those patients who had surgery, 70% had mastectomy while 30% had breast conserving surgery. Overall, chemotherapy was administered to 56% of patients and hormonal treatment to 60%. Five-year overall survival was 82.5% in patients with TNM stage 0 to stage II cancer, and 30.2% in those with later stages. Copyright © 2011 Elsevier Ltd. All rights reserved.

Design and implementation of a mobile system for lung cancer patient follow-up in China and initial report of the ongoing patient registry

PubMed Central

Li, Ziming; Niu, Xiaomin; Wang, Jiemin; Chen, Yunqin; Guo, Zongming; Lu, Shun

2017-01-01

Introduction Management of lung cancer remains a challenge. Although clinical and biological patient data are crucial for cancer research, these data may be missing from registries and clinical trials. Biobanks provide a source of high-quality biological material for clinical research; however, linking these samples to the corresponding patient and clinical data is technically challenging. We describe the mobile Lung Cancer Care system (mLCCare), a novel tool which integrates biological and clinical patient data into a single resource. Methods mLCCare was developed as a mobile device application (app) and an internet website. Data storage is hosted on cloud servers, with the mobile app and website acting as a front-end to the system. mLCCare also facilitates communication with patients to remind them to take their medication and attend follow-up appointments. Results Between January 2014 and October 2015, 5,080 patients with lung cancer have been registered with mLCCare. Data validation ensures all the patient information is of consistently high-quality. Patient cohorts can be constructed via user-specified criteria and data exported for statistical analysis by authorized investigators and collaborators. mLCCare forms the basis of establishing an ongoing lung cancer registry and could form the basis of a high-quality multisite patient registry. Integration of mLCCare with SMS messaging and WeChat functionality facilitates communication between physicians and patients. Conclusion It is hoped that mLCCare will prove to be a powerful and widely used tool that will enhance both research and clinical practice. PMID:27911868

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

PubMed

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

2014-08-01

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

Application of data mining techniques and data analysis methods to measure cancer morbidity and mortality data in a regional cancer registry: The case of the island of Crete, Greece.

PubMed

Varlamis, Iraklis; Apostolakis, Ioannis; Sifaki-Pistolla, Dimitra; Dey, Nilanjan; Georgoulias, Vassilios; Lionis, Christos

2017-07-01

Micro or macro-level mapping of cancer statistics is a challenging task that requires long-term planning, prospective studies and continuous monitoring of all cancer cases. The objective of the current study is to present how cancer registry data could be processed using data mining techniques in order to improve the statistical analysis outcomes. Data were collected from the Cancer Registry of Crete in Greece (counties of Rethymno and Lasithi) for the period 1998-2004. Data collection was performed on paper forms and manually transcribed to a single data file, thus introducing errors and noise (e.g. missing and erroneous values, duplicate entries etc.). Data were pre-processed and prepared for analysis using data mining tools and algorithms. Feature selection was applied to evaluate the contribution of each collected feature in predicting patients' survival. Several classifiers were trained and evaluated for their ability to predict survival of patients. Finally, statistical analysis of cancer morbidity and mortality rates in the two regions was performed in order to validate the initial findings. Several critical points in the process of data collection, preprocessing and analysis of cancer data were derived from the results, while a road-map for future population data studies was developed. In addition, increased morbidity rates were observed in the counties of Crete (Age Standardized Morbidity/Incidence Rates ASIR= 396.45 ± 2.89 and 274.77 ±2.48 for men and women, respectively) compared to European and world averages (ASIR= 281.6 and 207.3 for men and women in Europe and 203.8 and 165.1 in world level). Significant variation in cancer types between sexes and age groups (the ratio between deaths and reported cases for young patients, less than 34 years old, is at 0.055 when the respective ratio for patients over 75 years old is 0.366) was also observed. This study introduced a methodology for preprocessing and analyzing cancer data, using a

Breast cancer patients survival and associated factors: reported outcomes from the Southern Cancer Registry in Portugal.

PubMed

André, Maria Rosario; Amaral, Sandra; Mayer, Alexandra; Miranda, Ana

2014-01-01

Although the breast cancer incidence in Portugal is lower than the European average, it is the most frequent cancer in women. Overall, mortality rates are heterogeneous throughout Portugal. Implicated factors may include demographic and socioeconomic aspects, tumor biological characteristics, and access to medical care. The aim of this study is to detect survival differences in female breast cancer and identify the main associated factors. We have conducted a population-based, retrospective cohort study with follow-up. Incident breast cancer cases diagnosed in 2005 of residents in the southern region of Portugal were included. Data was collected from the Southern Portugal Cancer Registry (ROR-Sul) database and completed with clinical chart information. A total of 1 354 patients were included in this study. Observed geographical variations were as follows: for age distribution, with an aging population in Alentejo; for tumor sub-types, there was a higher incidence of HER2-positive tumors in the Algarve and a higher incidence of HER2-negative tumors in Região Autónoma da Madeira. Reported estimated 5-year overall survival was 80%, with significant association with tumor stage, hormone receptor and HER2 status. No survival differences were identified among women from distinct geographical regions. Although we found differences in age and tumor sub-type distribution between geographical regions, our study does not support the existence of discrepancies in breast cancer survival between these regions. Tumor biological characteristics seem to be the main associated factor with breast cancer survival in our population. Our study confirms the association between patient survival and tumor stage, hormone receptor and HER2 status. However, no differences in patient survival were observed among different regions of residence.

Development of National Program of Cancer Registries SAS Tool for Population-Based Cancer Relative Survival Analysis.

PubMed

Dong, Xing; Zhang, Kevin; Ren, Yuan; Wilson, Reda; O'Neil, Mary Elizabeth

2016-01-01

Studying population-based cancer survival by leveraging the high-quality cancer incidence data collected by the Centers for Disease Control and Prevention's National Program of Cancer Registries (NPCR) can offer valuable insight into the cancer burden and impact in the United States. We describe the development and validation of a SASmacro tool that calculates population-based cancer site-specific relative survival estimates comparable to those obtained through SEER*Stat. The NPCR relative survival analysis SAS tool (NPCR SAS tool) was developed based on the relative survival method and SAS macros developed by Paul Dickman. NPCR cancer incidence data from 25 states submitted in November 2012 were used, specifically cases diagnosed from 2003 to 2010 with follow-up through 2010. Decennial and annual complete life tables published by the National Center for Health Statistics (NCHS) for 2000 through 2009 were used. To assess comparability between the 2 tools, 5-year relative survival rates were calculated for 25 cancer sites by sex, race, and age group using the NPCR SAS tool and the National Cancer Institute's SEER*Stat 8.1.5 software. A module to create data files for SEER*Stat was also developed for the NPCR SAS tool. Comparison of the results produced by both SAS and SEER*Stat showed comparable and reliable relative survival estimates for NPCR data. For a majority of the sites, the net differences between the NPCR SAS tool and SEER*Stat-produced relative survival estimates ranged from -0.1% to 0.1%. The estimated standard errors were highly comparable between the 2 tools as well. The NPCR SAS tool will allow researchers to accurately estimate cancer 5-year relative survival estimates that are comparable to those produced by SEER*Stat for NPCR data. Comparison of output from the NPCR SAS tool and SEER*Stat provided additional quality control capabilities for evaluating data prior to producing NPCR relative survival estimates.

Lung Cancer Occurrence in Never-Smokers: An Analysis of 13 Cohorts and 22 Cancer Registry Studies

PubMed Central

Thun, Michael J; Hannan, Lindsay M; Adams-Campbell, Lucile L; Boffetta, Paolo; Buring, Julie E; Feskanich, Diane; Flanders, W. Dana; Jee, Sun Ha; Katanoda, Kota; Kolonel, Laurence N; Lee, I-Min; Marugame, Tomomi; Palmer, Julie R; Riboli, Elio; Sobue, Tomotaka; Avila-Tang, Erika; Wilkens, Lynne R; Samet, Jon M

2008-01-01

Background Better information on lung cancer occurrence in lifelong nonsmokers is needed to understand gender and racial disparities and to examine how factors other than active smoking influence risk in different time periods and geographic regions. Methods and Findings We pooled information on lung cancer incidence and/or death rates among self-reported never-smokers from 13 large cohort studies, representing over 630,000 and 1.8 million persons for incidence and mortality, respectively. We also abstracted population-based data for women from 22 cancer registries and ten countries in time periods and geographic regions where few women smoked. Our main findings were: (1) Men had higher death rates from lung cancer than women in all age and racial groups studied; (2) male and female incidence rates were similar when standardized across all ages 40+ y, albeit with some variation by age; (3) African Americans and Asians living in Korea and Japan (but not in the US) had higher death rates from lung cancer than individuals of European descent; (4) no temporal trends were seen when comparing incidence and death rates among US women age 40–69 y during the 1930s to contemporary populations where few women smoke, or in temporal comparisons of never-smokers in two large American Cancer Society cohorts from 1959 to 2004; and (5) lung cancer incidence rates were higher and more variable among women in East Asia than in other geographic areas with low female smoking. Conclusions These comprehensive analyses support claims that the death rate from lung cancer among never-smokers is higher in men than in women, and in African Americans and Asians residing in Asia than in individuals of European descent, but contradict assertions that risk is increasing or that women have a higher incidence rate than men. Further research is needed on the high and variable lung cancer rates among women in Pacific Rim countries. PMID:18788891

Breast Cancer and African Ancestry: Lessons Learned at the 10-Year Anniversary of the Ghana-Michigan Research Partnership and International Breast Registry

PubMed Central

Jiagge, Evelyn; Oppong, Joseph Kwaku; Bensenhaver, Jessica; Aitpillah, Francis; Gyan, Kofi; Kyei, Ishmael; Osei-Bonsu, Ernest; Adjei, Ernest; Ohene-Yeboah, Michael; Toy, Kathy; Jackson, Karen Eubanks; Akpaloo, Marian; Acheampong, Dorcas; Antwi, Beatrice; Agyeman, Faustina Obeng; Alhassan, Zainab; Fondjo, Linda Ahenkorah; Owusu-Afriyie, Osei; Brewer, Robert Newman; Gyamfuah, Amma; Salem, Barbara; Johnson, Timothy; Wicha, Max; Merajver, Sofia; Kleer, Celina; Pang, Judy; Amankwaa-Frempong, Emmanuel; Stark, Azadeh; Abantanga, Francis; Awuah, Baffour

2016-01-01

Women with African ancestry in western, sub-Saharan Africa and in the United States represent a population subset facing an increased risk of being diagnosed with biologically aggressive phenotypes of breast cancer that are negative for the estrogen receptor, the progesterone receptor, and the HER2/neu marker. These tumors are commonly referred to as triple-negative breast cancer. Disparities in breast cancer incidence and outcome related to racial or ethnic identity motivated the establishment of the International Breast Registry, on the basis of partnerships between the Komfo Anokye Teaching Hospital in Kumasi, Ghana, the University of Michigan Comprehensive Cancer Center in Ann Arbor, Michigan, and the Henry Ford Health System in Detroit, Michigan. This research collaborative has featured educational training programs as well as scientific investigations related to the comparative biology of breast cancer in Ghanaian African, African American, and white/European American patients. Currently, the International Breast Registry has expanded to include African American patients throughout the United States by partnering with the Sisters Network (a national African American breast cancer survivors’ organization) and additional sites in Ghana (representing West Africa) as well as Ethiopia (representing East Africa). Its activities are now coordinated through the Henry Ford Health System International Center for the Study of Breast Cancer Subtypes. Herein, we review the history and results of this international program at its 10-year anniversary. PMID:28717716

Effectiveness Modelling and Economic Evaluation of Primary HPV Screening for Cervical Cancer Prevention in New Zealand

PubMed Central

Lew, Jie-Bin; Simms, Kate; Smith, Megan; Lewis, Hazel; Neal, Harold; Canfell, Karen

2016-01-01

Background New Zealand (NZ) is considering transitioning from 3-yearly cervical cytology screening in women 20–69 years (current practice) to primary HPV screening. We evaluated HPV-based screening in both HPV-unvaccinated women and cohorts offered HPV vaccination in New Zealand (vaccination coverage ~50%). Methods A complex model of HPV transmission, vaccination, cervical screening, and invasive cervical cancer was extensively validated against national population-based datasets. Sixteen potential strategies for HPV screening were considered. Results Most primary HPV strategies were more effective than current practice, for both unvaccinated women and cohorts offered vaccination. The optimal strategy for both groups was 5-yearly HPV screening in women aged 25–69 years with partial genotyping for HPV 16/18 and referral to colposcopy, and cytological triage of other oncogenic types. This is predicted to reduce cervical cancer incidence and mortality by a further 12–16% and to save 4–13% annually in program costs (excluding overheads). The findings are sensitive to assumptions about future adherence to initiating screening at 25 years. Conclusion Primary HPV screening with partial genotyping would be more effective and less costly than the current cytology-based screening program, in both unvaccinated women and cohorts offered vaccination. These findings have been considered in a review of cervical screening in NZ. PMID:27187495

RSA and registries: the quest for phased introduction of new implants.

PubMed

Nelissen, Rob G H H; Pijls, Bart G; Kärrholm, Johan; Malchau, Henrik; Nieuwenhuijse, Marc J; Valstar, Edward R

2011-12-21

Although the overall survival of knee and hip prostheses at ten years averages 90%, recent problems with several hip and knee prostheses have illustrated that the orthopaedic community, industry, and regulators can still further improve patient safety. Given the early predictive properties of roentgen stereophotogrammetric analysis (RSA) and the meticulous follow-up of national joint registries, these two methods are ideal tools for such a phased clinical introduction. In this paper, we elaborate on the predictive power of RSA within a two-year follow-up after arthroplasty and its relationship to national joint registries. The association between RSA prosthesis-migration data and registry data is evaluated. The five-year rate of revision of RSA-tested total knee replacements was compared with that of non-RSA-tested total knee replacements. Data were extracted from the published results of the national joint registries of Sweden, Australia, and New Zealand. There was a 22% to 35% reduction in the number of revisions of RSA-tested total knee replacements as compared with non-RSA-tested total knee replacements in the national joint registries. Assuming that the total cost of total knee arthroplasty is $37,000 in the United States, a 22% to 35% reduction in the number of revisions (currently close to 55,000 annually) could lead to an estimated annual savings of over $400 million to the health-care system. The phased clinical introduction of new prostheses with two-year RSA results as a qualitative tool could lead to better patient care and could reduce the costs associated with revision total knee arthroplasty. Follow-up in registries is necessary to substantiate these results and to improve post-market surveillance.

Endometrial cancers in mutation carriers from hereditary breast ovarian cancer syndrome kindreds: report from the Creighton University Hereditary Cancer Registry with review of the implications.

PubMed

Casey, Murray Joseph; Bewtra, Chhanda; Lynch, Henry T; Snyder, Carrie L; Stacey, Mark

2015-05-01

The aim of this study was to categorize and report endometrial cancers in mutation carriers from hereditary breast ovarian cancer families. Our Hereditary Cancer Registry was searched for gynecologic and peritoneal cancers linked to mutations in BRCA1 or BRCA2. Invasive cancers were registered in 101 mutation carriers with complete pathology reports. Efforts were made to secure diagnostic surgical pathology tissues for review. All records and available diagnostic slides were meticulously studied, and primary cancers were classified. Eight malignancies were classified as primary endometrial cancers. Five of these were low- or intermediate-grade endometrioid carcinomas, and 3 were pure serous carcinomas or contained serous carcinoma elements mixed with high-grade endometrioid carcinoma. Breast cancers were diagnosed in 5 patients before and in 1 patient after endometrial carcinoma. Three endometrioid carcinomas were preceded by estrogen treatment, 2 for many years and the other for only 2 months, and 2 of the patients with serous carcinoma had been treated with tamoxifen. The finding that 8 of gynecologic and peritoneal cancers in 101 mutation carriers were endometrial cancers with a smaller proportion of endometrioid carcinomas than reported in general populations is added to the current controversial literature on endometrial cancer, particularly regarding serous carcinomas, in hereditary breast ovarian cancer syndrome. Well-designed prospective programs for standardized surgical and pathologic handling, processing, and reporting are essential for working out the pathogenesis, true risks, and best management of this disease in carriers of deleterious BRCA1 and BRCA2 germline mutations.

Assessing effects of structural zeros on models of canine cancer incidence: a case study of the Swiss Canine Cancer Registry.

PubMed

Boo, Gianluca; Leyk, Stefan; Fabrikant, Sara Irina; Pospischil, Andreas; Graf, Ramona

2017-05-11

Epidemiological research of canine cancers could inform comparative studies of environmental determinants for a number of human cancers. However, such an approach is currently limited because canine cancer data sources are still few in number and often incomplete. Incompleteness is typically due to under-ascertainment of canine cancers. A main reason for this is because dog owners commonly do not seek veterinary care for this diagnosis. Deeper knowledge on under-ascertainment is critical for modelling canine cancer incidence, as an indication of zero incidence might originate from the sole absence of diagnostic examinations within a given sample unit. In the present case study, we investigated effects of such structural zeros on models of canine cancer incidence. In doing so, we contrasted two scenarios for modelling incidence data retrieved from the Swiss Canine Cancer Registry. The first scenario was based on the complete enumeration of incidence data for all Swiss municipal units. The second scenario was based on a filtered sample that systematically discarded structural zeros in those municipal units where no diagnostic examination had been performed. By means of cross-validation, we assessed and contrasted statistical performance and predictive power of the two modelling scenarios. This analytical step allowed us to demonstrate that structural zeros impact on the generalisability of the model of canine cancer incidence, thus challenging future comparative studies of canine and human cancers. The results of this case study show that increased awareness about the effects of structural zeros is critical to epidemiological research.

A cohort study of ethnic differences in use of adjuvant chemotherapy and radiation therapy for breast cancer in New Zealand.

PubMed

Seneviratne, Sanjeewa; Campbell, Ian; Scott, Nina; Lawrenson, Ross

2017-01-21

Ethnic and socioeconomic inequities in use of breast cancer adjuvant therapy are well documented in many countries including the USA, and are known to contribute to lower breast cancer survival among minority ethnic and socioeconomically deprived women. We investigated ethnic and socioeconomic inequities in use of adjuvant radiotherapy and chemotherapy in a cohort of women with invasive breast cancer in New Zealand. All women with newly diagnosed invasive breast cancer during 1999-2012 were identified from the Waikato Breast Cancer Register. Rates of chemotherapy use and radiotherapy use were assessed in women who were deemed to be eligible for chemotherapy (n = 1212) and radiotherapy (n = 1708) based on guidelines. Factors associated with use of chemotherapy and radiation therapy were analysed in univariate and multivariate regression models, adjusting for covariates. Overall, rates of chemotherapy and radiotherapy use were 69% (n = 836) and 87.3% (n = 1491), respectively. In the multivariate model, significantly lower rates of radiotherapy use were associated with Māori compared with NZ European (Odds Ratio [OR] = 0.63, 0.40-0.98), presence of comorbidity (OR = 0.49, 0.34-0.72), distance from hospital of over 100km (OR = 0.47, 0.23-0.96), mastectomy compared with breast conserving surgery (OR = 0.32, 0.17-0.56) and non-screen compared with screen detection (OR = 0.53, 0.35-0.79). No significant associations were observed between chemotherapy use and ethnic or socio-demographic factors. Improving access for radiotherapy, especially for women who are at a higher risk of not receiving optimum cancer therapy due to ethnicity, geography or socioeconomic status need to be recognized as a priority to reduce inequities in breast cancer care in New Zealand.

Machine-learning prediction of cancer survival: a retrospective study using electronic administrative records and a cancer registry.

PubMed

Gupta, Sunil; Tran, Truyen; Luo, Wei; Phung, Dinh; Kennedy, Richard Lee; Broad, Adam; Campbell, David; Kipp, David; Singh, Madhu; Khasraw, Mustafa; Matheson, Leigh; Ashley, David M; Venkatesh, Svetha

2014-03-17

Using the prediction of cancer outcome as a model, we have tested the hypothesis that through analysing routinely collected digital data contained in an electronic administrative record (EAR), using machine-learning techniques, we could enhance conventional methods in predicting clinical outcomes. A regional cancer centre in Australia. Disease-specific data from a purpose-built cancer registry (Evaluation of Cancer Outcomes (ECO)) from 869 patients were used to predict survival at 6, 12 and 24 months. The model was validated with data from a further 94 patients, and results compared to the assessment of five specialist oncologists. Machine-learning prediction using ECO data was compared with that using EAR and a model combining ECO and EAR data. Survival prediction accuracy in terms of the area under the receiver operating characteristic curve (AUC). The ECO model yielded AUCs of 0.87 (95% CI 0.848 to 0.890) at 6 months, 0.796 (95% CI 0.774 to 0.823) at 12 months and 0.764 (95% CI 0.737 to 0.789) at 24 months. Each was slightly better than the performance of the clinician panel. The model performed consistently across a range of cancers, including rare cancers. Combining ECO and EAR data yielded better prediction than the ECO-based model (AUCs ranging from 0.757 to 0.997 for 6 months, AUCs from 0.689 to 0.988 for 12 months and AUCs from 0.713 to 0.973 for 24 months). The best prediction was for genitourinary, head and neck, lung, skin, and upper gastrointestinal tumours. Machine learning applied to information from a disease-specific (cancer) database and the EAR can be used to predict clinical outcomes. Importantly, the approach described made use of digital data that is already routinely collected but underexploited by clinical health systems.

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

PubMed

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

2017-09-20

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

Melanoma reporting to central cancer registries by US dermatologists: an analysis of the persistent knowledge and practice gap.

PubMed

Cartee, Todd V; Kini, Seema P; Chen, Suephy C

2011-11-01

Every state requires diagnosing physicians to report new cases of melanoma to its central cancer registry. Previous regional studies and anecdotal experience suggest that few dermatologists are cognizant of this obligation. This oversight could result in a large number of unreported melanomas annually and, in turn, US melanoma statistics that markedly underestimate the true incidence of the disease. We sought to quantify the percentage of dermatologists who are unaware of melanoma reporting requirements (the knowledge gap) and who are not reporting melanoma diagnoses (the practice gap). We also sought to delineate factors predictive of reporting knowledge and behavior. A survey was administered to attendees of the Cutaneous Oncology Symposium at the 2010 American Academy of Dermatology annual meeting. In all, 104 of 419 eligible attendees completed surveys (response rate 26%). Fifty percent of respondents do not believe they are required to report melanomas and 56% do not actively report their diagnoses to a registry. Practice duration of less than 10 years was significantly associated with both a knowledge gap (P = .047) and practice gap (P = .056). Similarly, dermatologists who diagnosed fewer than 10 melanomas per year were more likely to possess a knowledge gap (P = .096) and a practice gap (P = .087) than those who diagnosed more than 10. Limitations include small sample size and low response rate. A majority of dermatologists are not reporting melanomas they diagnose to a cancer registry, and half of those surveyed were not aware that diagnosing physicians are required to report melanoma. Copyright © 2011 American Academy of Dermatology, Inc. Published by Mosby, Inc. All rights reserved.

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

PubMed

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

2008-05-01

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

HIV and cancer registry linkage identifies a substantial burden of cancers in persons with HIV in India

PubMed Central

Godbole, Sheela V.; Nandy, Karabi; Gauniyal, Mansi; Nalawade, Pallavi; Sane, Suvarna; Koyande, Shravani; Toyama, Joy; Hegde, Asha; Virgo, Phil; Bhatia, Kishor; Paranjape, Ramesh S.; Risbud, Arun R.; Mbulaiteye, Sam M.; Mitsuyasu, Ronald T.

2016-01-01

Abstract We utilized computerized record-linkage methods to link HIV and cancer databases with limited unique identifiers in Pune, India, to determine feasibility of linkage and obtain preliminary estimates of cancer risk in persons living with HIV (PLHIV) as compared with the general population. Records of 32,575 PLHIV were linked to 31,754 Pune Cancer Registry records (1996–2008) using a probabilistic-matching algorithm. Cancer risk was estimated by calculating standardized incidence ratios (SIRs) in the early (4–27 months after HIV registration), late (28–60 months), and overall (4–60 months) incidence periods. Cancers diagnosed prior to or within 3 months of HIV registration were considered prevalent. Of 613 linked cancers to PLHIV, 188 were prevalent, 106 early incident, and 319 late incident. Incident cancers comprised 11.5% AIDS-defining cancers (ADCs), including cervical cancer and non-Hodgkin lymphoma (NHL), but not Kaposi sarcoma (KS), and 88.5% non-AIDS-defining cancers (NADCs). Risk for any incident cancer diagnosis in early, late, and combined periods was significantly elevated among PLHIV (SIRs: 5.6 [95% CI 4.6–6.8], 17.7 [95% CI 15.8–19.8], and 11.5 [95% CI 10–12.6], respectively). Cervical cancer risk was elevated in both incidence periods (SIRs: 9.6 [95% CI 4.8–17.2] and 22.6 [95% CI 14.3–33.9], respectively), while NHL risk was elevated only in the late incidence period (SIR: 18.0 [95% CI 9.8–30.20]). Risks for NADCs were dramatically elevated (SIR > 100) for eye-orbit, substantially (SIR > 20) for all-mouth, esophagus, breast, unspecified-leukemia, colon-rectum-anus, and other/unspecified cancers; moderately elevated (SIR > 10) for salivary gland, penis, nasopharynx, and brain-nervous system, and mildly elevated (SIR > 5) for stomach. Risks for 6 NADCs (small intestine, testis, lymphocytic leukemia, prostate, ovary, and melanoma) were not elevated and 5 cancers, including multiple myeloma not seen. Our study

HIV and cancer registry linkage identifies a substantial burden of cancers in persons with HIV in India.

PubMed

Godbole, Sheela V; Nandy, Karabi; Gauniyal, Mansi; Nalawade, Pallavi; Sane, Suvarna; Koyande, Shravani; Toyama, Joy; Hegde, Asha; Virgo, Phil; Bhatia, Kishor; Paranjape, Ramesh S; Risbud, Arun R; Mbulaiteye, Sam M; Mitsuyasu, Ronald T

2016-09-01

We utilized computerized record-linkage methods to link HIV and cancer databases with limited unique identifiers in Pune, India, to determine feasibility of linkage and obtain preliminary estimates of cancer risk in persons living with HIV (PLHIV) as compared with the general population.Records of 32,575 PLHIV were linked to 31,754 Pune Cancer Registry records (1996-2008) using a probabilistic-matching algorithm. Cancer risk was estimated by calculating standardized incidence ratios (SIRs) in the early (4-27 months after HIV registration), late (28-60 months), and overall (4-60 months) incidence periods. Cancers diagnosed prior to or within 3 months of HIV registration were considered prevalent.Of 613 linked cancers to PLHIV, 188 were prevalent, 106 early incident, and 319 late incident. Incident cancers comprised 11.5% AIDS-defining cancers (ADCs), including cervical cancer and non-Hodgkin lymphoma (NHL), but not Kaposi sarcoma (KS), and 88.5% non-AIDS-defining cancers (NADCs). Risk for any incident cancer diagnosis in early, late, and combined periods was significantly elevated among PLHIV (SIRs: 5.6 [95% CI 4.6-6.8], 17.7 [95% CI 15.8-19.8], and 11.5 [95% CI 10-12.6], respectively). Cervical cancer risk was elevated in both incidence periods (SIRs: 9.6 [95% CI 4.8-17.2] and 22.6 [95% CI 14.3-33.9], respectively), while NHL risk was elevated only in the late incidence period (SIR: 18.0 [95% CI 9.8-30.20]). Risks for NADCs were dramatically elevated (SIR > 100) for eye-orbit, substantially (SIR > 20) for all-mouth, esophagus, breast, unspecified-leukemia, colon-rectum-anus, and other/unspecified cancers; moderately elevated (SIR > 10) for salivary gland, penis, nasopharynx, and brain-nervous system, and mildly elevated (SIR > 5) for stomach. Risks for 6 NADCs (small intestine, testis, lymphocytic leukemia, prostate, ovary, and melanoma) were not elevated and 5 cancers, including multiple myeloma not seen.Our study demonstrates the feasibility of

Long-term incidence trends of HPV-related cancers, and cases preventable by HPV vaccination: a registry-based study in Norway

PubMed Central

Campbell, Suzanne; Nygård, Mari

2018-01-01

Objectives Examine long-term incidence trends of human papillomavirus (HPV)-related cancer in Norway, and estimate the number of cancer cases preventable by vaccines against HPV 16/18 or HPV 16/18/31/33/45/52/58. Design Observational registry-based study. We extracted incident cases of HPV-related cancer during 1953–2015 from the Cancer Registry of Norway. Tumour HPV prevalence estimates from large international meta-analyses or from Norway were used to estimate the protective potential of HPV vaccines. Participants and setting The Norwegian population. Primary outcome measures Incidence trend analyses during 1953–2015 for squamous cell carcinoma (SCC) of the cervix, vulva, vagina, oropharynx, anus and penis, and adenocarcinoma of the cervix. Additionally, the number of cancer cases preventable by HPV vaccination. Results Among women, incidences of SCC of the anus, oropharynx, vulva and cervical adenocarcinoma increased, while vaginal SCC showed no trend. For these cancers combined, the average annual percentage change (AAPC) during 1953–2015 was 1.2 (95% CI 0.7 to 1.6). The incidence of cervical SCC generally decreased during 1976–2004 and remained stable thereafter. Among men, incidences of SCC of the anus, oropharynx and penis increased. The AAPC during 1953–2015 combined for all male HPV-related cancer was 1.9 (95% CI 1.3 to 2.5). A vaccine against HPV 16/18 might yearly prevent 402 (95% CI 382 to 420) cancers. A vaccine against HPV 16/18/31/33/45/52/58 might yearly prevent 478 (95% CI 464 to 490) cancers, of which 206 (95% CI 202 to 209) occur in non-cervical organs, and 113 (95% CI 110 to 115) occur among men. Conclusions The incidences of HPV-related cancers that are not effectively prevented by screening have generally increased during 1953–2015. HPV vaccination can prevent a substantial number of cancers in Norway, in cervical and non-cervical organs, among women and men. PMID:29476028

Hepatitis C virus infection and the risk of cancer among elderly US adults: A registry-based case-control study.

PubMed

Mahale, Parag; Torres, Harrys A; Kramer, Jennifer R; Hwang, Lu-Yu; Li, Ruosha; Brown, Eric L; Engels, Eric A

2017-04-01

Hepatitis C virus (HCV) infection causes hepatocellular carcinoma (HCC) and subtypes of non-Hodgkin lymphoma (NHL). Associations with other cancers are not established. The authors systematically assessed associations between HCV infection and cancers in the US elderly population. This was a registry-based case-control study using Surveillance, Epidemiology, and End Results (SEER)-Medicare data in US adults aged ≥66 years. Cases (n = 1,623,538) were patients who had first cancers identified in SEER registries (1993-2011). Controls (n = 200,000) were randomly selected, cancer-free individuals who were frequency-matched to cases on age, sex, race, and calendar year. Associations with HCV (documented by Medicare claims) were determined using logistic regression. HCV prevalence was higher in cases than in controls (0.7% vs 0.5%). HCV was positively associated with cancers of the liver (adjusted odds ratio [aOR] = 31.5; 95% confidence interval [CI], 29.0-34.3), intrahepatic bile duct (aOR, 3.40; 95% CI, 2.52-4.58), extrahepatic bile duct (aOR, 1.90; 95% CI, 1.41-2.57), pancreas (aOR, 1.23; 95% CI, 1.09-1.40), and anus (aOR, 1.97; 95% CI, 1.42-2.73); nonmelanoma nonepithelial skin cancer (aOR, 1.53; 95% CI, 1.15-2.04); myelodysplastic syndrome (aOR, 1.56; 95% CI, 1.33-1.83); and diffuse large B-cell lymphoma (aOR, 1.57; 95% CI, 1.34-1.84). Specific skin cancers associated with HCV were Merkel cell carcinoma (aOR, 1.92; 95% CI, 1.30-2.85) and appendageal skin cancers (aOR, 2.02; 95% CI, 1.29-3.16). Inverse associations were observed with uterine cancer (aOR, 0.64; 95% CI, 0.51-0.80) and prostate cancer (aOR, 0.73; 95% CI, 0.66-0.82). Associations were maintained in sensitivity analyses conducted among individuals without documented alcohol abuse, cirrhosis, or hepatitis B or human immunodeficiency virus infections and after adjustment for socioeconomic status. Associations of HCV with other cancers were not observed. HCV is associated with increased risk of

Hormone receptor status of contralateral breast cancers: analysis of data from the US SEER population-based registries.

PubMed

Mezencev, Roman; Švajdler, Marián

2017-05-01

Women diagnosed with breast cancer display higher propensity to develop second primary cancer in the contralateral breast (CBC). Identification of patients with increased risk of CBC and understanding relationships between hormone receptor (HR) statuses of the first and second breast cancers is desirable for endocrine-based prevention strategies. Using 1992-2012 data from 13 SEER registries, the risk of developing CBC was determined as ratio of observed and expected second breast cancers (SIR). Association between HR statuses was examined by exploratory data analysis and multivariable logistic regression. Women with ER-positive and ER-negative breast cancers have increased risk of developing CBC with SIR values 2.09 (CI 95 = 1.97-2.21) and 2.40 (CI 95 = 2.18-2.63), respectively. ER statuses of the CBC are moderately positively associated. In metachronous CBC, most cases with ER-positive first cancers had ER-positive second breast cancers (81.6 %; CI 95 = 80.2-82.9 %); however, considerable proportion of cases with ER-negative first cancers had ER-positive second cancers (48.8 %; CI 95 = 46.2-51.4 %). Some women with ER-negative breast cancers may benefit from endocrine-based prevention of ER-positive CBC.

Impact of mammographic screening on ethnic and socioeconomic inequities in breast cancer stage at diagnosis and survival in New Zealand: a cohort study.

PubMed

Seneviratne, Sanjeewa; Campbell, Ian; Scott, Nina; Shirley, Rachel; Lawrenson, Ross

2015-01-31

Indigenous Māori women experience a 60% higher breast cancer mortality rate compared with European women in New Zealand. We explored the impact of differences in rates of screen detected breast cancer on inequities in cancer stage at diagnosis and survival between Māori and NZ European women. All primary breast cancers diagnosed in screening age women (as defined by the New Zealand National Breast Cancer Screening Programme) during 1999-2012 in the Waikato area (n = 1846) were identified from the Waikato Breast Cancer Register and the National Screening Database. Stage at diagnosis and survival were compared for screen detected (n = 1106) and non-screen detected (n = 740) breast cancer by ethnicity and socioeconomic status. Indigenous Māori women were significantly more likely to be diagnosed with more advanced cancer compared with NZ European women (OR = 1.51), and approximately a half of this difference was explained by lower rate of screen detected cancer for Māori women. For non-screen detected cancer, Māori had significantly lower 10-year breast cancer survival compared with NZ European (46.5% vs. 73.2%) as did most deprived compared with most affluent socioeconomic quintiles (64.8% vs. 81.1%). No significant survival differences were observed for screen detected cancer by ethnicity or socioeconomic deprivation. The lower rate of screen detected breast cancer appears to be a key contributor towards the higher rate of advanced cancer at diagnosis and lower breast cancer survival for Māori compared with NZ European women. Among women with screen-detected breast cancer, Māori women do just as well as NZ European women, demonstrating the success of breast screening for Māori women who are able to access screening. Increasing breast cancer screening rates has the potential to improve survival for Māori women and reduce breast cancer survival inequity between Māori and NZ European women.

Ethnic patterns of hypospadias in New Zealand do not resemble those observed for cryptorchidism and testicular cancer: evidence of differential aetiology?

PubMed

Gurney, J K; Stanley, J; Shaw, C; Sarfati, D

2016-01-01

It has been proposed that hypospadias, cryptorchidism, poor semen quality and testicular cancer might share common prenatal causes. We have previously demonstrated similar ethnic patterns for the incidence of testicular cancer and cryptorchidism - a known risk factor for testicular cancer. If the underlying exposure(s) that cause hypospadias, cryptorchidism and testicular cancer are shared, then we would expect the incidence relationship between ethnic groups to follow the same pattern across all three conditions. We followed a birth cohort of 318 345 eligible male neonates born in New Zealand between 2000-2010, and linked routinely collected maternity records with inpatient hospitalization and mortality records through to 2011. We searched hospitalization records for diagnoses of hypospadias, and used mortality records for censoring. We used Poisson regression methods to compare the relative risk of hypospadias between ethnic groups, adjusting for perinatal risk factors and total person time. We observed that European/Other children had the highest risk of hypospadias, with Māori, Pacific and Asian boys having around 40% lower risk of disease compared with this group (adjusted relative risk [RR]: Māori 0.62, 95% CI 0.55-0.70; Pacific 0.62, 95% CI 0.53-0.72; Asian 0.57, 95% CI 0.47-0.69). This contrasts substantially with our previous observations for cryptorchidism and testicular cancer, where Māori males have the greatest risk. Our observations suggest that - at least in New Zealand - the exposures that drive the development of hypospadias may differ to those that that drive the development of cryptorchidism and/or testicular cancer. © 2015 American Society of Andrology and European Academy of Andrology.

Trends and variations in breast and colorectal cancer incidence from 1995 to 2011: a comparative study between Texas Cancer Registry and National Cancer Institute's Surveillance, Epidemiology and End Results data.

PubMed

Liu, Zheyu; Zhang, Yefei; Franzin, Luisa; Cormier, Janice N; Chan, Wenyaw; Xu, Hua; Du, Xianglin L

2015-04-01

Few studies have examined the cancer incidence trends in the state of Texas, and no study has ever been conducted to compare the temporal trends of breast and colorectal cancer incidence in Texas with those of the National Cancer Institute's Surveillance, Epidemiology and End Results (SEER) in the United States. This study aimed to conduct a parallel comparison between the Texas Cancer Registry and the National Cancer Institute's SEER on cancer incidence from 1995 to 2011. A total of 951,899 breast and colorectal cancer patients were included. Age-adjusted breast cancer incidence was 134.74 per 100,000 in Texas and 131.78 per 100,000 in SEER in 1995-2011, whereas age-adjusted colorectal cancer incidence was 50.52 per 100,000 in Texas and 49.44 per 100,000 in SEER. Breast cancer incidence increased from 1995 to 2001, decreased from 2002 to 2006, and then remained relatively stable from 2007 to 2011. For colorectal cancer, the incidence increased in 1995-1997, and then decreased continuously from 1998 to 2011 in Texas and SEER areas. Incidence rates and relative risks by age, gender and ethnicity were identical between Texas and SEER.

Long-term financial burden of breast cancer: experiences of a diverse cohort of survivors identified through population-based registries.

PubMed

Jagsi, Reshma; Pottow, John A E; Griffith, Kent A; Bradley, Cathy; Hamilton, Ann S; Graff, John; Katz, Steven J; Hawley, Sarah T

2014-04-20

To evaluate the financial experiences of a racially and ethnically diverse cohort of long-term breast cancer survivors (17% African American, 40% Latina) identified through population-based registries. Longitudinal study of women diagnosed with nonmetastatic breast cancer in 2005 to 2007 and reported to the SEER registries of metropolitan Los Angeles and Detroit. We surveyed 3,133 women approximately 9 months after diagnosis and 4 years later. Multivariable models evaluated correlates of self-reported decline in financial status attributed to breast cancer and of experiencing at least one type of privation (economically motivated treatment nonadherence and broader hardships related to medical expenses). Among 1,502 patients responding to both surveys, median out-of-pocket expenses were ≤ $2,000; 17% of respondents reported spending > $5,000; 12% reported having medical debt 4 years postdiagnosis. Debt varied significantly by race: 9% of whites, 15% of blacks, 17% of English-speaking Latinas, and 10% of Spanish-speaking Latinas reported debt (P = .03). Overall, 25% of women experienced financial decline at least partly attributed to breast cancer; Spanish-speaking Latinas had significantly increased odds of this decline relative to whites (odds ratio [OR], 2.76; P = .006). At least one privation was experienced by 18% of the sample; blacks (OR, 2.6; P < .001) and English-speaking Latinas (OR, 2.2; P = .02) were significantly more likely to have experienced privation than whites. Racial and ethnic minority patients appear most vulnerable to privations and financial decline attributable to breast cancer, even after adjustment for income, education, and employment. These findings should motivate efforts to control costs and ensure communication between patients and providers regarding financial distress, particularly for vulnerable subgroups.

How comparable are rates of malignancies in patients with rheumatoid arthritis across the world? A comparison of cancer rates, and means to optimise their comparability, in five RA registries.

PubMed

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

2016-10-01

The overall incidence of cancer in patients with rheumatoid arthritis (RA) is modestly elevated. The extent to which cancer rates in RA vary across clinical cohorts and patient subsets, as defined by disease activity or treatment is less known but critical for understanding the safety of existing and new antirheumatic therapies. We investigated comparability of, and means to harmonise, malignancy rates in five RA registries from four continents. Participating RA registries were Consortium of Rheumatology Researchers of North America (CORRONA) (USA), Swedish Rheumatology Quality of Care Register (SRR) (Sweden), Norfolk Arthritis Register (NOAR) (UK), CORRONA International (several countries) and Institute of Rheumatology, Rheumatoid Arthritis (IORRA) (Japan). Within each registry, we analysed a main cohort of all patients with RA from January 2000 to last available data, and sensitivity analyses of sub-cohorts defined by disease activity, treatment change, prior comorbidities and restricted by calendar time or follow-up, respectively. Malignancy rates with 95% CIs were estimated, and standardised for age and sex, based on the distributions from a typical RA clinical trial programme population (fostamatinib). There was a high consistency in rates for overall malignancy excluding non-melanoma skin cancer (NMSC), for malignant lymphomas, but not for all skin cancers, across registries, in particular following age/sex standardisation. Standardised rates of overall malignancy excluding NMSC varied from 0.56 to 0.87 per 100 person-years. Within each registry, rates were generally consistent across sensitivity analyses, which differed little from the main analysis. In real-world RA populations, rates of both overall malignancy and of lymphomas are consistent. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

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

PubMed

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

2016-12-01

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

Genetics Home Reference: prostate cancer

MedlinePlus

... prostate cancer Genetic Testing Registry: Prostate cancer aggressiveness quantitative trait locus on chromosome 19 Genetic Testing Registry: ... OMIM (25 links) PROSTATE CANCER PROSTATE CANCER AGGRESSIVENESS QUANTITATIVE TRAIT LOCUS ON CHROMOSOME 19 PROSTATE CANCER ANTIGEN ...

An Innovative Approach to Improve Completeness of Treatment and Other Key Data Elements in a Population-Based Cancer Registry: A15-Month Data Submission.

PubMed

Hsieh, Mei-Chin; Mumphrey, Brent; Pareti, Lisa; Yi, Yong; Wu, Xiao-Cheng

2017-01-01

BACKGROUND: In order to comply with the Louisiana legislative obligation and meet funding agencies’ requirement of case completeness for 12-month data submission, hospital cancer registries are mandated to submit cancer incidence data to the Louisiana Tumor Registry (LTR) within 6 months of diagnosis. However, enforcing compliance with timely reporting may result in incomplete data on adjuvant treatment received by the LTR. Although additional treatment information can be obtained via retransmission of the North American Association of Central Cancer Registries (NAACCR)–modified abstracts, consolidating multiple NAACCR-modified abstracts for the same case is extremely time consuming. To avoid a huge amount of work while obtaining timely and complete data, the LTR has requested hospital cancer registries resubmit their data 15 months after the close of the diagnosis year. The purpose of this report is to assess the improvement in the completeness of data items related to treatment, staging and site specific factors. METHODS: The LTR requested that hospital cancer registries resubmit 15-month data between April 1, 2016 and April 15, 2016 for cases diagnosed in 2014. Microsoft Visual Studio Visual Basic script was used to link and compare resubmitted data with existing data in the LTR database. Data elements used for matching same patient/tumor were name, Social Security number, date of birth, primary site, laterality, and hospital identifier number. Treatment data items were compared as known vs none/ unknown and known vs known with different code. Matched records with updated information were imported into the LTR database and flagged as modified abstract records for manual consolidation. Nonmatched records were also loaded in the LTR database as potential new cases for further investigation. RESULTS: A total of 25,207 resubmitted NAACCR abstracts were received from 38 hospitals and freestanding radiation centers. About 11.1% had at least 1 update related to

Human Papillomavirus Genotype Prevalence in Invasive Penile Cancers from a Registry-Based United States Population

PubMed Central

Hernandez, Brenda Y.; Goodman, Marc T.; Unger, Elizabeth R.; Steinau, Martin; Powers, Amy; Lynch, Charles F.; Cozen, Wendy; Saber, Maria Sibug; Peters, Edward S.; Wilkinson, Edward J.; Copeland, Glenn; Hopenhayn, Claudia; Huang, Youjie; Watson, Meg; Altekruse, Sean F.; Lyu, Christopher; Saraiya, Mona

2013-01-01

Background: Human papillomavirus (HPV) is estimated to play an etiologic role in 40–50% of penile cancers worldwide. Estimates of HPV prevalence in U.S. penile cancer cases are limited. Methods: HPV DNA was evaluated in tumor tissue from 79 invasive penile cancer patients diagnosed in 1998–2005 within the catchment areas of seven U.S. cancer registries. HPV was genotyped using PCR-based Linear Array and INNO-LiPA assays and compared by demographic, clinical, and pathologic characteristics and survival. Histological classification was also obtained by independent pathology review. Results: HPV DNA was present in 50 of 79 (63%) of invasive penile cancer cases. Sixteen viral genotypes were detected. HPV 16, found in 46% (36/79) of all cases (72% of HPV-positive cases) was the most prevalent genotype followed equally by HPV 18, 33, and 45, each of which comprised 5% of all cases. Multiple genotypes were detected in 18% of viral positive cases. HPV prevalence did not significantly vary by age, race/ethnicity, population size of geographic region, cancer stage, histology, grade, penile subsite, or prior cancer history. Penile cases diagnosed in more recent years were more likely to be HPV-positive. Overall survival did not significantly vary by HPV status. Conclusion: The relatively high prevalence of HPV in our study population provides limited evidence of a more prominent and, possibly, increasing role of infection in penile carcinogenesis in the U.S. compared to other parts of the world. PMID:24551592

Is a Preoperative Gastrointestinal Endoscopy for Second Primary Cancer Detection in Head and Neck Cancer Necessary? Ten-year Registry Data.

PubMed

Heo, Gyeong Mi; Kim, Mi Hee; Kim, Jin Hwan; Rho, Young Soo; Shin, Woon Geon

2016-07-25

In head and neck squamous cell carcinoma, second primary gastrointestinal tumors are not uncommon. However, it is unclear whether a screening endoscopy is needed for detecting gastrointestinal neoplasm in patients with head and neck cancer. Therefore, we analyzed the prevalence and independent risk factors for second primary gastrointestinal neoplasm in head and neck squamous cell carcinoma. A consecutive series of 328 patients with primary head and neck squamous cell carcinoma that underwent esophagogastroduodenoscopy or colonoscopy were included using our registry. An age- and sex-matched group of 328 control subjects was enrolled. We assessed risk factors of synchronous gastrointestinal cancer. The prevalence of esophageal cancer with head and neck squamous cell carcinoma was significantly higher than that of the control group (1.5% vs. 0.0%, p=0.011). An age of 54 years or more (OR, 1.033; 95% CI, 1.008-1.059; p=0.009) and male gender (OR, 4.974; 95% CI, 1.648-15.013; p=0.004) were risk factors for concomitant colorectal cancer or adenomas in the head and neck squamous cell carcinoma patients. Preoperative colonoscopy can be recommended for detecting synchronous second primary colorectal lesions in head and neck squamous cell carcinoma patients with male sex regardless of age, and esophagogastroduodenoscopy is necessary in all head and neck squamous cell carcinoma patients for detecting esophageal cancer.

Web-Delivered Cognitive Behavioral Therapy for Distressed Cancer Patients: Randomized Controlled Trial

PubMed Central

Ritterband, Lee M; Thorndike, Frances; Nielsen, Lisa; Aitken, Joanne F; Clutton, Samantha; Scuffham, Paul A; Youl, Philippa; Morris, Bronwyn; Baade, Peter D; Dunn, Jeff

2018-01-01

Background Web-based interventions present a potentially cost-effective approach to supporting self-management for cancer patients; however, further evidence for acceptability and effectiveness is needed. Objective The goal of our research was to assess the effectiveness of an individualized Web-based cognitive behavioral therapy (CBT) intervention on improving psychological and quality of life outcomes in cancer patients with elevated psychological distress. Methods A total of 163 distressed cancer patients (111 female, 68.1%) were recruited through the Queensland Cancer Registry and the Cancer Council Queensland Cancer Helpline and randomly assigned to either a Web-based tailored CBT intervention (CancerCope) (79/163) or a static patient education website (84/163). At baseline and 8-week follow-up we assessed primary outcomes of psychological and cancer-specific distress and unmet psychological supportive care needs and secondary outcomes of positive adjustment and quality of life. Results Intention-to-treat analyses showed no evidence of a statistically significant intervention effect on primary or secondary outcomes. However, per-protocol analyses found a greater decrease for the CancerCope group in psychological distress (P=.04), cancer-specific distress (P=.02), and unmet psychological care needs (P=.03) from baseline to 8 weeks compared with the patient education group. Younger patients were more likely to complete the CancerCope intervention. Conclusions This online CBT intervention was associated with greater decreases in distress for those patients who more closely adhered to the program. Given the low costs and high accessibility of this intervention approach, even if only effective for subgroups of patients, the potential impact may be substantial. Trial Registration Australian New Zealand Clinical Trials Registry ACTRN12613001026718; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=364768&isReview=true (Archived by WebCite at http

Dysphagia and malignancy: A three-year follow-up and survey of National Cancer Registry data.

PubMed

Nevalainen, Pia; Geneid, Ahmed; Ilmarinen, Taru; Pietarinen, Petra; Kinnari, Teemu J; Rihkanen, Heikki; Ruohoalho, Johanna; Markkanen-Leppänen, Mari; Bäck, Leif; Arkkila, Perttu; Aaltonen, Leena-Maija

2016-09-01

Dysphagia may cause concern about malignancy. Symptoms are often unspecific; thus, it is essential to identify those requiring further investigations. Retrospective study combined with patient survey. Case records of the 303 dysphagia patients referred in 2009 to Helsinki University Hospital, Department of Otorhinolaryngology-Head and Neck Surgery were surveyed. Based on clinical data, the main cause of symptoms divided patients into five groups. Alarming signs were food sticking in the throat or in the esophagus, weight loss, and progressive dysphagia symptoms. A questionnaire sent 3 years after the primary visit concerned the present symptoms. To investigate whether dysphagia could have been early symptom of malignancy, we surveyed the Finnish Cancer Registry database until the end of 2012. Most diagnoses remained descriptive: unspecific dysphagia (167, 55%). Five (0.02%) had malignant disease, for all of whom the suspicion of malignancy was evident. Finnish Cancer Registry data indicated that unspecific dysphagia did not develop into malignancy during a 3-year follow-up. Returned questionnaires numbered 154 (62%), of which 30 (19%) were asymptomatic patients; relieved symptoms in 36 (23%), fluctuating or unchanged symptoms in 43 (28%), and worse symptoms in 12 (8%). The remaining patients (33, 21%) had not answered that question or the answer was uninterpretable. Further investigations to reveal malignancy seemed unnecessary if alarming clinical signs or findings were lacking. After 3 years, almost half the patients were asymptomatic or had milder symptoms revealing the condition's potential for spontaneous recovery. N/A. Laryngoscope, 126:2073-2078, 2016. © 2015 The American Laryngological, Rhinological and Otological Society, Inc.

Incidence of Bladder Cancer in Sri Lanka: Analysis of the Cancer Registry Data and Review of the Incidence of Bladder Cancer in the South Asian Population

PubMed Central

De Silva, Daswin; De Silva, M.V.C.; Ranasinghe, Tamra I J; Lawrentschuk, Nathan; Bolton, Damien; Persad, Raj

2012-01-01

Purpose To investigate the incidence of bladder cancer (BC) in Sri Lanka and to compare risk factors and outcomes with those of other South Asian nations and South Asian migrants to the United Kingdom (UK) and the United States (US). Materials and Methods The incidence of BC in Sri Lanka was examined by using two separate cancer registry databases over a 5-year period. Smoking rates were compiled by using a population-based survey from 2001 to 2009 and the relative risk was calculated by using published data. Results A total of 637 new cases of BC were diagnosed over the 5-year period. Sri Lankan BC incidence increased from 1985 but remained low (1.36 and 0.3 per 100,000 in males and females) and was similar to the incidence in other South Asian countries. The incidence was lower, however, than in migrant populations in the US and the UK. In densely populated districts of Sri Lanka, these rates almost doubled. Urothelial carcinoma accounted for 72%. The prevalence of male smokers in Sri Lanka was 39%, whereas Pakistan had higher smoking rates with a 6-fold increase in BC. Conclusions Sri Lankan BC incidence was low, similar to other South Asian countries (apart from Pakistan), but the actual incidence is likely higher than the cancer registry rates. Smoking is likely to be the main risk factor for BC. Possible under-reporting in rural areas could account for the low rates of BC in Sri Lanka. Any genetic or environmental protective effects of BC in South Asians seem to be lost on migration to the UK or the US and with higher levels of smoking, as seen in Pakistan. PMID:22670188

The contemporary management of prostate cancer in the United States: lessons from the cancer of the prostate strategic urologic research endeavor (CapSURE), a national disease registry.

PubMed

Cooperberg, Matthew R; Broering, Jeanette M; Litwin, Mark S; Lubeck, Deborah P; Mehta, Shilpa S; Henning, James M; Carroll, Peter R

2004-04-01

The epidemiology and treatment of prostate cancer have changed dramatically in the prostate specific antigen era. A large disease registry facilitates the longitudinal observation of trends in disease presentation, management and outcomes. The Cancer of the Prostate Strategic Urologic Research Endeavor (CaPSURE) is a national disease registry of more than 10000 men with prostate cancer accrued at 31 primarily community based sites across the United States. Demographic, clinical, quality of life and resource use variables are collected on each patient. We reviewed key findings from the data base in the last 8 years in the areas of disease management trends, and oncological and quality of life outcomes. Prostate cancer is increasingly diagnosed with low risk clinical characteristics. With time patients have become less likely to receive pretreatment imaging tests, less likely to pursue watchful waiting and more likely to receive brachytherapy or hormonal therapy. Relatively few patients treated with radical prostatectomy in the database are under graded or under staged before surgery, whereas the surgical margin rate is comparable to that in academic series. CaPSURE data confirm the usefulness of percent positive biopsies in risk assessment and they have further been used to validate multiple preoperative nomograms. CaPSURE results strongly affirm the necessity of patient reported quality of life assessment. Multiple studies have compared the quality of life impact of various treatment options, particularly in terms of urinary and sexual function, and bother. The presentation and management of prostate cancer have changed substantially in the last decade. CaPSURE will continue to track these trends as well as oncological and quality of life outcomes, and will continue to be an invaluable resource for the study of prostate cancer at the national level.

Machine-learning prediction of cancer survival: a retrospective study using electronic administrative records and a cancer registry

PubMed Central

Gupta, Sunil; Tran, Truyen; Luo, Wei; Phung, Dinh; Kennedy, Richard Lee; Broad, Adam; Campbell, David; Kipp, David; Singh, Madhu; Khasraw, Mustafa; Matheson, Leigh; Ashley, David M; Venkatesh, Svetha

2014-01-01

Objectives Using the prediction of cancer outcome as a model, we have tested the hypothesis that through analysing routinely collected digital data contained in an electronic administrative record (EAR), using machine-learning techniques, we could enhance conventional methods in predicting clinical outcomes. Setting A regional cancer centre in Australia. Participants Disease-specific data from a purpose-built cancer registry (Evaluation of Cancer Outcomes (ECO)) from 869 patients were used to predict survival at 6, 12 and 24 months. The model was validated with data from a further 94 patients, and results compared to the assessment of five specialist oncologists. Machine-learning prediction using ECO data was compared with that using EAR and a model combining ECO and EAR data. Primary and secondary outcome measures Survival prediction accuracy in terms of the area under the receiver operating characteristic curve (AUC). Results The ECO model yielded AUCs of 0.87 (95% CI 0.848 to 0.890) at 6 months, 0.796 (95% CI 0.774 to 0.823) at 12 months and 0.764 (95% CI 0.737 to 0.789) at 24 months. Each was slightly better than the performance of the clinician panel. The model performed consistently across a range of cancers, including rare cancers. Combining ECO and EAR data yielded better prediction than the ECO-based model (AUCs ranging from 0.757 to 0.997 for 6 months, AUCs from 0.689 to 0.988 for 12 months and AUCs from 0.713 to 0.973 for 24 months). The best prediction was for genitourinary, head and neck, lung, skin, and upper gastrointestinal tumours. Conclusions Machine learning applied to information from a disease-specific (cancer) database and the EAR can be used to predict clinical outcomes. Importantly, the approach described made use of digital data that is already routinely collected but underexploited by clinical health systems. PMID:24643167

Cancer Incidence in Five Continents: Inclusion criteria, highlights from Volume X and the global status of cancer registration.

PubMed

Bray, F; Ferlay, J; Laversanne, M; Brewster, D H; Gombe Mbalawa, C; Kohler, B; Piñeros, M; Steliarova-Foucher, E; Swaminathan, R; Antoni, S; Soerjomataram, I; Forman, D

2015-11-01

Cancer Incidence in Five Continents (CI5), a longstanding collaboration between the International Agency for Research on Cancer and the International Association of Cancer Registries, serves as a unique source of cancer incidence data from high-quality population-based cancer registries around the world. The recent publication of Volume X comprises cancer incidence data from 290 registries covering 424 populations in 68 countries for the registration period 2003-2007. In this article, we assess the status of population-based cancer registries worldwide, describe the techniques used in CI5 to evaluate their quality and highlight the notable variation in the incidence rates of selected cancers contained within Volume X of CI5. We also discuss the Global Initiative for Cancer Registry Development as an international partnership that aims to reduce the disparities in availability of cancer incidence data for cancer control action, particularly in economically transitioning countries, already experiencing a rapid rise in the number of cancer patients annually. © 2015 UICC.

Clinical verification of genetic results returned to research participants: findings from a Colon Cancer Family Registry.

PubMed

Laurino, Mercy Y; Truitt, Anjali R; Tenney, Lederle; Fisher, Douglass; Lindor, Noralane M; Veenstra, David; Jarvik, Gail P; Newcomb, Polly A; Fullerton, Stephanie M

2017-11-01

The extent to which participants act to clinically verify research results is largely unknown. This study examined whether participants who received Lynch syndrome (LS)-related findings pursued researchers' recommendation to clinically verify results with testing performed by a CLIA-certified laboratory. The Fred Hutchinson Cancer Research Center site of the multinational Colon Cancer Family Registry offered non-CLIA individual genetic research results to select registry participants (cases and their enrolled relatives) from 2011 to 2013. Participants who elected to receive results were counseled on the importance of verifying results at a CLIA-certified laboratory. Twenty-six (76.5%) of the 34 participants who received genetic results completed 2- and 12-month postdisclosure surveys; 42.3% of these (11/26) participated in a semistructured follow-up interview. Within 12 months of result disclosure, only 4 (15.4%) of 26 participants reported having verified their results in a CLIA-certified laboratory; of these four cases, all research and clinical results were concordant. Reasons for pursuing clinical verification included acting on the recommendation of the research team and informing future clinical care. Those who did not verify results cited lack of insurance coverage and limited perceived personal benefit of clinical verification as reasons for inaction. These findings suggest researchers will need to address barriers to seeking clinical verification in order to ensure that the intended benefits of returning genetic research results are realized. © 2017 The Authors. Molecular Genetics & Genomic Medicine published by Wiley Periodicals, Inc.

Therapeutic priorities for solitary large hepatocellular carcinoma in a hepatitis B virus endemic area; an analysis of a nationwide cancer registry database.

PubMed

Jin, Young-Joo; Lee, Jin-Woo

2017-03-01

We compared overall survival (OS) of patients with a solitary large (>5 cm) hepatocellular carcinoma (HCC) treated surgically or by transarterial chemoembolization (TACE). The archived records of HCC patients registered at the Korean Central Cancer Registry from 2003 through 2005 (registry A, n = 4 520) or from 2008 through 2010 (registry B, n = 4 596) were retrospectively analyzed. In these registries, 578 and 315 patients had a single large HCC, respectively. In registry A, 442 (cohort A) underwent surgery (n = 96) or TACE (n = 346). In registry B, 253 (cohort B) underwent surgery (n = 110) or TACE (n = 143). Cohort C (n = 695) was constructed by combining cohorts A and B, and thus, 206 and 489 patients received surgery and TACE, respectively. In cohort C, cumulative OS rates at 1-, 3-, and 5-years were significantly higher for surgery than TACE (89.3%, 67.4%, and 58.0% vs 67.7%, 38.2%, and 27.2%, respectively, P < 0.001). Similar results were obtained for cohorts A and B, even after propensity-score matching in three cohorts (P values for all <0.05). TACE (HR 2.18, P < 0.001), serum albumin (HR 0.77, P = 0.015), and tumor size (HR 1.06, P < 0.001) were predictors of post-treatment mortality. Surgery is associated with improved OS for a solitary large HCC of BCLC stage A. © 2016 Wiley Periodicals, Inc.

Identification of constitutional MLH1 epimutations and promoter variants in colorectal cancer patients from the Colon Cancer Family Registry

PubMed Central

Ward, Robyn L.; Dobbins, Timothy; Lindor, Noralane M.; Rapkins, Robert W.; Hitchins, Megan P.

2013-01-01

Purpose: Constitutional MLH1 epimutations manifest as promoter methylation and silencing of the affected allele in normal tissues, predisposing to Lynch syndrome–associated cancers. This study investigated their frequency and inheritance. Methods: A total of 416 individuals with a colorectal cancer showing loss of MLH1 expression and without deleterious germline mutations in MLH1 were ascertained from the Colon Cancer Family Registry (C-CFR). Constitutive DNA samples were screened for MLH1 methylation in all 416 subjects and for promoter sequence changes in 357 individuals. Results: Constitutional MLH1 epimutations were identified in 16 subjects. Of these, seven (1.7%) had mono- or hemi-allelic methylation and eight had low-level methylation (2%). In one subject the epimutation was linked to the c.-27C>A promoter variant. Testing of 37 relatives from nine probands revealed paternal transmission of low-level methylation segregating with a c.+27G>A variant in one case. Five additional probands had a promoter variant without an MLH1 epimutation, with three showing diminished promoter activity in functional assays. Conclusion: Although rare, sequence changes in the regulatory region of MLH1 and aberrant methylation may alone or together predispose to the development of cancer. Screening for these changes is warranted in individuals who have a negative germline sequence screen of MLH1 and loss of MLH1 expression in their tumor. PMID:22878509

Performance of Self-Report to Establish Cancer Diagnoses in Disaster Responders and Survivors, World Trade Center Health Registry, New York, 2001-2007.

PubMed

Li, Jiehui; Cone, James E; Alt, Abigail K; Wu, David R; Liff, Jonathan M; Farfel, Mark R; Stellman, Steven D

2016-01-01

Large-scale disasters may disrupt health surveillance systems, depriving health officials and researchers of timely and accurate information needed to assess disaster-related health effects and leading to use of less reliable self-reports of health outcomes. In particular, ascertainment of cancer in a population is ordinarily obtained through linkage of self-reported data with regional cancer registries, but exclusive reliance on these sources following a disaster may result in lengthy delays or loss of critical data. To assess the impact of such reliance, we validated self-reported cancer in a cohort of 59,340 responders and survivors of the World Trade Center disaster against data from 11 state cancer registries (SCRs). We focused on residents of the 11 states with SCRs and on cancers diagnosed from September 11, 2001, to the date of their last survey participation. Medical records were also sought in a subset of 595 self-reported cancer patients who were not recorded in an SCR. Overall sensitivity and specificity of self-reported cancer were 83.9% (95% confidence interval [CI] 81.9, 85.9) and 98.5% (95% CI 98.4, 98.6), respectively. Site-specific sensitivities were highest for pancreatic (90.9%) and testicular (82.4%) cancers and multiple myeloma (84.6%). Compared with enrollees with true-positive reports, enrollees with false-negative reports were more likely to be non-Hispanic black (adjusted odds ratio [aOR] = 1.8, 95% CI 1.2, 2.9) or Asian (aOR=2.2, 95% CI 1.2, 4.1). Among the 595 cases not recorded in an SCR, 13 of 62 (21%) cases confirmed through medical records were reportable to SCRs. Self-report of cancer had relatively high sensitivity among adults exposed to the World Trade Center disaster, suggesting that self-reports of other disaster-related conditions less amenable to external validation may also be reasonably valid.

Quality of race, Hispanic ethnicity, and immigrant status in population-based cancer registry data: implications for health disparity studies.

PubMed

Clegg, Limin X; Reichman, Marsha E; Hankey, Benjamin F; Miller, Barry A; Lin, Yi D; Johnson, Norman J; Schwartz, Stephen M; Bernstein, Leslie; Chen, Vivien W; Goodman, Marc T; Gomez, Scarlett L; Graff, John J; Lynch, Charles F; Lin, Charles C; Edwards, Brenda K

2007-03-01

Population-based cancer registry data from the Surveillance, Epidemiology, and End Results (SEER) Program at the National Cancer Institute are based on medical records and administrative information. Although SEER data have been used extensively in health disparities research, the quality of information concerning race, Hispanic ethnicity, and immigrant status has not been systematically evaluated. The quality of this information was determined by comparing SEER data with self-reported data among 13,538 cancer patients diagnosed between 1973-2001 in the SEER--National Longitudinal Mortality Study linked database. The overall agreement was excellent on race (kappa = 0.90, 95% CI = 0.88-0.91), moderate to substantial on Hispanic ethnicity (kappa = 0.61, 95% CI = 0.58-0.64), and low on immigrant status (kappa = 0.21. 95% CI = 0.10, 0.23). The effect of these disagreements was that SEER data tended to under-classify patient numbers when compared to self-identifications, except for the non-Hispanic group which was slightly over-classified. These disagreements translated into varying racial-, ethnic-, and immigrant status-specific cancer statistics, depending on whether self-reported or SEER data were used. In particular, the 5-year Kaplan-Meier survival and the median survival time from all causes for American Indians/Alaska Natives were substantially higher when based on self-classification (59% and 140 months, respectively) than when based on SEER classification (44% and 53 months, respectively), although the number of patients is small. These results can serve as a useful guide to researchers contemplating the use of population-based registry data to ascertain disparities in cancer burden. In particular, the study results caution against evaluating health disparities by using birthplace as a measure of immigrant status and race information for American Indians/Alaska Natives.

Analysis of Stage and Clinical/Prognostic Factors for Lung Cancer from SEER Registries: AJCC Staging and Collaborative Stage Data Collection System

PubMed Central

Chen, Vivien W.; Ruiz, Bernardo A.; Hsieh, Mei-Chin; Wu, Xiao-Cheng; Ries, Lynn; Lewis, Denise R.

2014-01-01

Introduction The American Joint Committee on Cancer (AJCC) 7th edition introduced major changes in the staging of lung cancer, including Tumor (T), Node (N), Metastasis (M) (TNM) system and new stage/prognostic site-specific factors (SSFs), collected under the Collaborative Stage Version 2 (CSv2) Data Collection System. The intent was to improve the stage precision which could guide treatment options and ultimately lead to better survival. This report examines stage trends, the change in stage distributions from the AJCC 6th to the 7th edition, and findings of the prognostic SSFs for 2010 lung cancer cases. Methods Data were from the November 2012 submission of 18 Surveillance, Epidemiology, and End Results (SEER) Program population-based registries. A total of 344 797 cases of lung cancer, diagnosed in 2004–2010, were analyzed. Results The percentages of small tumors and early stage lung cancer cases increased from 2004 to 2010. The AJCC 7th edition, implemented for 2010 diagnosis year, subclassified tumor size and reclassified multiple tumor nodules, pleural effusions, and involvement of tumors in the contralateral lung, resulting in a slight decrease in stage IB and stage IIIB and a small increase in stage IIA and stage IV. Overall about 80% of cases remained the same stage group in AJCC 6th and 7th editions. About 21% of lung cancer patients had separate tumor nodules in the ipsilateral (same) lung, and 23% of the surgically resected patients had visceral pleural invasion, both adverse prognostic factors. Conclusion It is feasible for high quality population-based registries such as the SEER Program to collect more refined staging and prognostic SSFs that allows better categorization of lung cancer patients with different clinical outcomes and to assess their survival. PMID:25412390

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. © 2014 UICC.

Feasibility test of a UK-scalable electronic system for regular collection of patient-reported outcome measures and linkage with clinical cancer registry data: the electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system.

PubMed

Ashley, Laura; Jones, Helen; Forman, David; Newsham, Alex; Brown, Julia; Downing, Amy; Velikova, Galina; Wright, Penny

2011-10-26

Cancer survivors can face significant physical and psychosocial challenges; there is a need to identify and predict which survivors experience what sorts of difficulties. As highlighted in the UK National Cancer Survivorship Initiative, routine post-diagnostic collection of patient reported outcome measures (PROMs) is required; to be most informative, PROMs must be linked and analysed with patients' diagnostic and treatment information. We have designed and built a potentially cost-efficient UK-scalable electronic system for collecting PROMs via the internet, at regular post-diagnostic time-points, for linking these data with patients' clinical data in cancer registries, and for electronically managing the associated patient monitoring and communications; the electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system. This study aims to test the feasibility of the ePOCS system, by running it for 2 years in two Yorkshire NHS Trusts, and using the Northern and Yorkshire Cancer Registry and Information Service. Non-metastatic breast, colorectal and prostate cancer patients (largest survivor groups), within 6 months post-diagnosis, will be recruited from hospitals in the Yorkshire Cancer Network. Participants will be asked to complete PROMS, assessing a range of health-related quality-of-life outcomes, at three time-points up to 15 months post-diagnosis, and subsequently to provide opinion on the ePOCS system via a feedback questionnaire. Feasibility will be examined primarily in terms of patient recruitment and retention rates, the representativeness of participating patients, the quantity and quality of collected PROMs data, patients' feedback, the success and reliability of the underpinning informatics, and the system running costs. If sufficient data are generated during system testing, these will be analysed to assess the health-related quality-of-life outcomes reported by patients, and to explore if and how they relate to disease, treatment and

Pharmacists' views on and experiences with bowel cancer screening kits in Auckland, New Zealand.

PubMed

Martini, Nataly; Basdew, Kamlika; Kammona, Ala; Shen, Amy; Taylor, Caragh; McIntosh, Timothy R; Barnes, Joanne

2014-08-01

To explore the views of New Zealand pharmacists on bowel cancer screening, particularly with regards to faecal occult blood testing (FOBT) kits, self-perceived knowledge on FOBT kits and barriers, motivators and experiences with selling and counselling consumers with respect to FOBT kits. Semi-structured interviews were conducted face to face or by telephone with 20 community pharmacists in the Auckland region. Interviews were recorded and transcribed verbatim and data were coded and analysed using NVivo software to identify key themes. Participant pharmacists believed that they were well placed to provide advice on FOBT kits to consumers. Barriers to selling the kits included cost and perceived lack of test sensitivity of the kits, poor consumer demand, pharmacists' lack of training and information, and a belief that selling FOBT kits was outside the pharmacists' scope of practice. Motivators to selling the kits included customer convenience, ease of use, confidence in the kits and embracing new roles for pharmacists. Pharmacists were concerned that use of the kits may increase the burden on the public health system through customer anxiety over test results; however, they agreed that there was a need for bowel cancer screening and awareness and that people concerned about bowel cancer should make visiting their general practitioner a priority. Pharmacists' views were mixed. Pharmacists' training and competence with respect to the provision of bowel cancer kits, and how a bowel cancer screening service can be developed to optimise public health outcomes, need to be addressed. © 2013 Royal Pharmaceutical Society.

The Working After Cancer Study (WACS): a population-based study of middle-aged workers diagnosed with colorectal cancer and their return to work experiences.

PubMed

Gordon, Louisa G; Lynch, Brigid M; Beesley, Vanessa L; Graves, Nicholas; McGrath, Catherine; O'Rourke, Peter; Webb, Penelope M

2011-07-29

The number of middle-aged working individuals being diagnosed with cancer is increasing and so too will disruptions to their employment. The aim of the Working After Cancer Study is to examine the changes to work participation in the 12 months following a diagnosis of primary colorectal cancer. The study will identify barriers to work resumption, describe limitations on workforce participation, and evaluate the influence of these factors on health-related quality of life. An observational population-based study has been designed involving 260 adults newly-diagnosed with colorectal cancer between January 2010 and September 2011 and who were in paid employment at the time they were diagnosed. These cancer cases will be compared to a nationally representative comparison group of 520 adults with no history of cancer from the general population. Eligible cases will have a histologically confirmed diagnosis of colorectal cancer and will be identified through the Queensland Cancer Registry. Data on the comparison group will be drawn from the Household, Income and Labour Dynamics in Australia (HILDA) Survey. Data collection for the cancer group will occur at 6 and 12 months after diagnosis, with work questions also asked about the time of diagnosis, while retrospective data on the comparison group will be come from HILDA Waves 2009 and 2010. Using validated instruments administered via telephone and postal surveys, data will be collected on socio-demographic factors, work status and circumstances, and health-related quality of life (HRQoL) for both groups while the cases will have additional data collected on cancer treatment and symptoms, work productivity and cancer-related HRQoL. Primary outcomes include change in work participation at 12 months, time to work re-entry, work limitations and change in HRQoL status. This study will address the reasons for work cessation after cancer, the mechanisms people use to remain working and existing workplace support structures and

Trends and variations in breast and colorectal cancer incidence from 1995 to 2011: A comparative study between Texas Cancer Registry and National Cancer Institute’s Surveillance, Epidemiology and End Results data

PubMed Central

LIU, ZHEYU; ZHANG, YEFEI; FRANZIN, LUISA; CORMIER, JANICE N.; CHAN, WENYAW; XU, HUA; DU, XIANGLIN L.

2015-01-01

Few studies have examined the cancer incidence trends in the state of Texas, and no study has ever been conducted to compare the temporal trends of breast and colorectal cancer incidence in Texas with those of the National Cancer Institute’s Surveillance, Epidemiology and End Results (SEER) in the United States. This study aimed to conduct a parallel comparison between the Texas Cancer Registry and the National Cancer Institute’s SEER on cancer incidence from 1995 to 2011. A total of 951,899 breast and colorectal cancer patients were included. Age-adjusted breast cancer incidence was 134.74 per 100,000 in Texas and 131.78 per 100,000 in SEER in 1995–2011, whereas age-adjusted colorectal cancer incidence was 50.52 per 100,000 in Texas and 49.44 per 100,000 in SEER. Breast cancer incidence increased from 1995 to 2001, decreased from 2002 to 2006, and then remained relatively stable from 2007 to 2011. For colorectal cancer, the incidence increased in 1995–1997, and then decreased continuously from 1998 to 2011 in Texas and SEER areas. Incidence rates and relative risks by age, gender and ethnicity were identical between Texas and SEER. PMID:25672365

Cancer spectrum in DNA mismatch repair gene mutation carriers: results from a hospital based Lynch syndrome registry

PubMed Central

Pande, Mala; Wei, Chongjuan; Chen, Jinyun; Amos, Christopher I.; Lynch, Patrick M.; Lu, Karen H.; Lucio, Laura A.; Boyd-Rogers, Stephanie G.; Bannon, Sarah A.; Mork, Maureen E.

2012-01-01

The spectrum of cancers seen in a hospital based Lynch syndrome registry of mismatch repair gene mutation carriers was examined to determine the distribution of cancers and examine excess cancer risk. Overall there were 504 cancers recorded in 368 mutation carriers from 176 families. These included 236 (46.8 %) colorectal and 268 (53.2 %) extracolonic cancers. MLH1 mutation carriers had a higher frequency of colorectal cancers whereas MSH2, MSH6 and PMS2 mutation carriers had more extracolonic cancers although these differences were not statistically significant. Men had fewer extracolonic cancers than colorectal (45.3 vs. 54.7 %), whereas women had more extracolonic than colorectal cancers (59.0 vs. 41.0 %). The mean age at diagnosis overall for extracolonic cancers was older than for colorectal, 49.1 versus 44.8 years (P ≤ 0.001). As expected, the index cancer was colorectal in 58.1 % of patients and among the extracolonic index cancers, endometrial was the most common (13.8 %). A significant number of non-Lynch syndrome index cancers were recorded including breast (n = 5) prostate (n = 3), thyroid (n = 3), cervix (n = 3), melanoma (n = 3), and 1 case each of thymoma, sinus cavity, and adenocarcinoma of the lung. However, standardized incidence ratios calculated to assess excess cancer risk showed that only those cancers known to be associated with Lynch syndrome were significant in our sample. We found that Lynch syndrome patients can often present with cancers that are not considered part of Lynch syndrome. This has clinical relevance both for diagnosis of Lynch syndrome and surveillance for cancers of different sites during follow-up of these patients. PMID:22714864

2001 Annual Report of the Korea Central Cancer Registry: Based on Registered Data from 134 Hospitals

PubMed Central

Shin, Hai-Rim; Won, Young-Joo; Jung, Kyu-Won

2004-01-01

Purpose To estimate the number of cancer cases during 2001, in Korea, through a nationwide hospital based cancer registration by the Korea Central Cancer Registry (KCCR). Materials and Methods One hundred and thirty four hospitals participated in the KCCR program in 2001. Cancer cases were coded and classified according to the International Classification of Diseases for Oncology 2nd edition (ICD-O-2). The software program "IARC Check" was used to evaluate the quality of the registered cancer cases. Of the 111,816 malignancies registered, 10,106 (9.0%) duplicated malignancies were excluded. Among the remaining 95,542 malignancies, 3,598 (3.8%) cases with carcinoma in situ (Morphology code/2) were separated. Finally, 91,944 malignancies were analyzed. Results Of the total 91,944 malignancies, 51,753 (56.3%) cases were males and 40,191 (43.7%) were females. More than one third of cases were from the elderly (65 years old and more). The six leading primary cancer sites, in the order of their relative frequency, were stomach (24.1%), followed by the lung (16.0%), the liver (16.0%), the colorectum (10.5%), the bladder (3.4%), and the prostate (2.8%) among males. In females, the breast (16.1%) was the common cancer site, followed by the stomach (15.3%), the colorectum (10.5%), the cervix uteri (10.1%), the thyroid gland (8.3%) and the lung (6.6%). Conclusion With the continued increase in cancer cases, the total number of registered cancer cases in Korea continues to rapidly increase. PMID:20396562

2002 Annual Report of the Korea Central Cancer Registry: Based on Registered Data from 139 Hospitals

PubMed Central

Shin, Hai-Rim; Jung, Kyu-Won; Won, Young-Joo

2004-01-01

Purpose To estimate the number of cancer cases during 2002 in Korea through a nationwide hospital based cancer registration by the Korea Central Cancer Registry (KCCR). Materials and Methods One hundred and thirty nine hospitals participated in the KCCR program in 2002. Cancer cases were coded and classified according to the International Classification of Diseases for Oncology 2nd edition (ICD-O-2). The software program "IARC Check" was used to evaluate the quality of registered cancer cases. Of the 122,770 malignancies registered, 11,732 (9.6%) duplicated malignancies were excluded. Among the remaining 102,677 malignancies, 3,652 (3.6%) cases with carcinoma in situ (Morphology code/2) were separated. Finally, 99,025 malignancies were analyzed. Results Of the total of 99,025 malignancies, 55,398 (55.9%) cases were males and 43,627 (44.1%) were females. More than one third of cases were from the elderly (65 years old and more). The six leading primary cancer sites in the order of their relative frequency, were stomach (24.0%), followed by the lung (16.0%), the liver (15.4%), the colorectum (11.6%), the bladder (3.2%), and the prostate (3.0%) among males. In females, the breast (16.8%) was the common cancer site, followed by the stomach (15.3%), the colorectum (10.7%), the thyroid gland (9.5%), the cervix uteri (9.1%), and the lung (6.6%). Conclusion With the continued increase in cancer cases especially prostate cancer among males and thyroid cancer among females, the total number of registered cancer cases in Korea continues to rapidly increase. PMID:20396549

Analyzing quality of colorectal cancer care through registry statistics: a small community hospital example.

PubMed

Hopewood, Ian

2011-01-01

As the quantity of elderly Americans requiring oncologic care grows, and as cancer treatment and medicine become more advanced, assessing quality of cancer care becomes a necessary and advantageous practice for any facility.' Such analysis is especially practical in small community hospitals, which may not have the resources of their larger academic counterparts to ensure that the care being provided is current and competitive in terms of both technique and outcome. This study is a comparison of the colorectal cancer care at one such center, Falmouth Community Hospital (FCH)--located in Falmouth, Massachusetts, about an hour and a half away from the nearest metropolitan center--to the care provided at a major nearby Boston Tertiary Center (BTC) and at teaching and research facilities across New England and the United States. The metrics used to measure performance encompass both outcome (survival rate data) as well as technique, including quality of surgery (number of lymph nodes removed) and the administration of adjuvant treatments, chemotherapy, and radiation therapy, as per national guidelines. All data for comparison between FCH and BTC were culled from those hospitals' tumor registries. Data for the comparison between FCH and national tertiary/referral centers were taken from the American College of Surgeons' Commission on Cancer, namely National Cancer Data Base (NCDB) statistics, Hospital Benchmark Reports and Practice Profile Reports. The results showed that, while patients at FCH were diagnosed at both a higher age and at a more advanced stage of colorectal cancer than their BTC counterparts, FCH stands up favorably to BTC and other large centers in terms of the metrics referenced above. Quality assessment such as the analysis conducted here can be used at other community facilities to spotlight, and ultimately eliminate, deficiencies in cancer programs.

[Population-based cancer registration in Germany. Essentials and perspectives].

PubMed

Katalinic, A

2004-05-01

Although cancer registration has a long tradition in Germany, wide areas remained blank spaces on the map concerning population-based cancer registration. The situation changed completely when a federal law on cancer registration (KRG, 1995-1999) took effect. Now all federal states have established population-based cancer registries on a legal basis. In spite of the uniform model of cancer registration anchored in the KRG, 16 different models have developed in Germany. Completeness of cancer registration was constantly improved over the last several years. In addition to the Saarland cancer registry, further registries can now provide a high grade of registration for all cancer sites. Essential tasks, such as public reporting and support of cancer research, can now be better fulfilled. Even taking the great developments in cancer registration in Germany into consideration, some deficits still continue to exist. These deficits are mostly caused by heterogeneity and missing compatibility of the cancer registry laws of the federal states. After the focus of cancer registration was on developing valid registries,now the focus has to be changed to the usability of cancer registry data. These data can be used e. g. for research on etiology and evaluation of programs on early cancer detection. Scientists in the field of cancer epidemiology, public health, and cancer care are invited to use data of cancer registries for research and evaluation projects intensively.

The Breast Cancer Family Registry: an infrastructure for cooperative multinational, interdisciplinary and translational studies of the genetic epidemiology of breast cancer

PubMed Central

John, Esther M; Hopper, John L; Beck, Jeanne C; Knight, Julia A; Neuhausen, Susan L; Senie, Ruby T; Ziogas, Argyrios; Andrulis, Irene L; Anton-Culver, Hoda; Boyd, Norman; Buys, Saundra S; Daly, Mary B; O'Malley, Frances P; Santella, Regina M; Southey, Melissa C; Venne, Vickie L; Venter, Deon J; West, Dee W; Whittemore, Alice S; Seminara, Daniela

2004-01-01

Introduction The etiology of familial breast cancer is complex and involves genetic and environmental factors such as hormonal and lifestyle factors. Understanding familial aggregation is a key to understanding the causes of breast cancer and to facilitating the development of effective prevention and therapy. To address urgent research questions and to expedite the translation of research results to the clinical setting, the National Cancer Institute (USA) supported in 1995 the establishment of a novel research infrastructure, the Breast Cancer Family Registry, a collaboration of six academic and research institutions and their medical affiliates in the USA, Canada, and Australia. Methods The sites have developed core family history and epidemiology questionnaires, data dictionaries, and common protocols for biospecimen collection and processing and pathology review. An Informatics Center has been established to collate, manage, and distribute core data. Results As of September 2003, 9116 population-based and 2834 clinic-based families have been enrolled, including 2346 families from minority populations. Epidemiology questionnaire data are available for 6779 affected probands (with a personal history of breast cancer), 4116 unaffected probands, and 16,526 relatives with or without a personal history of breast or ovarian cancer. The biospecimen repository contains blood or mouthwash samples for 6316 affected probands, 2966 unaffected probands, and 10,763 relatives, and tumor tissue samples for 4293 individuals. Conclusion This resource is available to internal and external researchers for collaborative, interdisciplinary, and translational studies of the genetic epidemiology of breast cancer. Detailed information can be found at the URL . PMID:15217505

Integrating Patient Reported Outcomes With Clinical Cancer Registry Data: A Feasibility Study of the Electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) System

PubMed Central

Jones, Helen; Thomas, James; Newsham, Alex; Downing, Amy; Morris, Eva; Brown, Julia; Velikova, Galina; Forman, David; Wright, Penny

2013-01-01

Background Routine measurement of Patient Reported Outcomes (PROs) linked with clinical data across the patient pathway is increasingly important for informing future care planning. The innovative electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system was developed to integrate PROs, collected online at specified post-diagnostic time-points, with clinical and treatment data in cancer registries. Objective This study tested the technical and clinical feasibility of ePOCS by running the system with a sample of potentially curable breast, colorectal, and prostate cancer patients in their first 15 months post diagnosis. Methods Patients completed questionnaires comprising multiple Patient Reported Outcome Measures (PROMs) via ePOCS within 6 months (T1), and at 9 (T2) and 15 (T3) months, post diagnosis. Feasibility outcomes included system informatics performance, patient recruitment, retention, representativeness and questionnaire completion (response rate), patient feedback, and administration burden involved in running the system. Results ePOCS ran efficiently with few technical problems. Patient participation was 55.21% (636/1152) overall, although varied by approach mode, and was considerably higher among patients approached face-to-face (61.4%, 490/798) than by telephone (48.8%, 21/43) or letter (41.0%, 125/305). Older and less affluent patients were less likely to join (both P<.001). Most non-consenters (71.1%, 234/329) cited information technology reasons (ie, difficulty using a computer). Questionnaires were fully or partially completed by 85.1% (541/636) of invited participants at T1 (80 questions total), 70.0% (442/631) at T2 (102-108 questions), and 66.3% (414/624) at T3 (148-154 questions), and fully completed at all three time-points by 57.6% (344/597) of participants. Reminders (mainly via email) effectively prompted responses. The PROs were successfully linked with cancer registry data for 100% of patients (N=636). Participant feedback

[Assessing the economic impact of cancer in Chile: a direct and indirect cost measurement based on 2009 registries].

PubMed

Cid, Camilo; Herrera, Cristian; Rodríguez, Rodrigo; Bastías, Gabriel; Jiménez, Jorge

2016-08-02

This paper aims to determine the economic impact that cancer represents to Chile, exploring the share of costs for the most important cancers and the differences between the public and private sector. We used the cost of illness methodology, through the assessment of the direct and indirect costs associated with cancer treatment. Data was obtained from 2009 registries of the Chilean Ministry of Health and the Superintendence of Health. Indirect costs were calculated by days of job absenteeism and potential years of life lost. Over US$ 2.1 billion were spent on cancer in 2009, which represents almost 1% of Chile’s Gross Domestic Product. The direct per capita cost was US$ 47. Indirect costs were 1.92 times more than direct costs. The three types of cancer that embody the highest share of costs were gastric cancer (17.6%), breast cancer (7%) and prostate cancer (4.2%) in the public sector, and breast cancer (14%), lung cancer (7.5%) and prostate cancer (4.1%) in the private sector. On average men spent 30.33% more than women. There are few studies of this kind in Chile and the region. The country can be classified as having a cancer economic impact below the average of those in European Union countries. We expect that this information can be used to develop access policies and resource allocation decision making, and as a first step into further cancer-costing studies in Chile and the Latin American and Caribbean region.

Informatics and data quality at collaborative multicenter Breast and Colon Cancer Family Registries.

PubMed

McGarvey, Peter B; Ladwa, Sweta; Oberti, Mauricio; Dragomir, Anca Dana; Hedlund, Erin K; Tanenbaum, David Michael; Suzek, Baris E; Madhavan, Subha

2012-06-01

Quality control and harmonization of data is a vital and challenging undertaking for any successful data coordination center and a responsibility shared between the multiple sites that produce, integrate, and utilize the data. Here we describe a coordinated effort between scientists and data managers in the Cancer Family Registries to implement a data governance infrastructure consisting of both organizational and technical solutions. The technical solution uses a rule-based validation system that facilitates error detection and correction for data centers submitting data to a central informatics database. Validation rules comprise both standard checks on allowable values and a crosscheck of related database elements for logical and scientific consistency. Evaluation over a 2-year timeframe showed a significant decrease in the number of errors in the database and a concurrent increase in data consistency and accuracy.

Risk Factors Associated With Circumferential Resection Margin Positivity in Rectal Cancer: A Binational Registry Study.

PubMed

Warrier, Satish K; Kong, Joseph Cherng; Guerra, Glen R; Chittleborough, Timothy J; Naik, Arun; Ramsay, Robert G; Lynch, A Craig; Heriot, Alexander G

2018-04-01

Rectal cancer outcomes have improved with the adoption of a multidisciplinary model of care. However, there is a spectrum of quality when viewed from a national perspective, as highlighted by the Consortium for Optimizing the Treatment of Rectal Cancer data on rectal cancer care in the United States. The aim of this study was to assess and identify predictors of circumferential resection margin involvement for rectal cancer across Australasia. A retrospective study from a prospectively maintained binational colorectal cancer database was interrogated. This study is based on a binational colorectal cancer audit database. Clinical information on all consecutive resected rectal cancer cases recorded in the registry from 2007 to 2016 was retrieved, collated, and analyzed. The primary outcome measure was positive circumferential resection margin, measured as a resection margin ≤1 mm. A total of 3367 patients were included, with 261 (7.5%) having a positive circumferential resection margin. After adjusting for hospital and surgeon volume, hierarchical logistic regression analysis identified a 6-variable model encompassing the independent predictors, including urgent operation, abdominoperineal resection, open technique, low rectal cancer, T3 to T4, and N1 to N2. The accuracy of the model was 92.3%, with an receiver operating characteristic of 0.783 (p < 0.0001). The quantitative risk associated with circumferential resection margin positivity ranged from <1% (no risk factors) to 43% (6 risk factors). This study was limited by the lack of recorded long-term outcomes associated with circumferential resection margin positivity. The rate of circumferential resection margin involvement in patients undergoing rectal cancer resection in Australasia is low and is influenced by a number of factors. Risk stratification of outcome is important with the increasing demand for publicly accessible quality data. See Video Abstract at http://links.lww.com/DCR/A512.

The value of local registry data for describing cervical cancer management and outcomes over three decades in Australia.

PubMed

Roder, D; Davy, M; Selva-Nayagam, S; Gowda, R; Paramasivam, S; Adams, J; Keefe, D; Eckert, M; Powell, K; Fusco, K; Buranyi-Trevarton, D; Oehler, M K

2018-01-01

Registry data on invasive cervical cancers (n = 1,274) from four major hospitals (1984-2012) were analysed to determine their value for informing local service delivery in Australia. The methodology comprised disease-specific survival analyses using Kaplan-Meier product-limit estimates and Cox proportional hazards models and treatment analyses using logistic regression. Five- and 10-year survivals were 72% and 68%, respectively, equating with relative survival estimates for Australia and the USA. Most common treatments were surgery and radiotherapy. Systemic therapies increased in recent years, generally with radiotherapy, but were less common for residents from less accessible areas. Surgery was more common for younger women and early-stage disease, and radiotherapy for older women and regional and more advanced disease. The proportion of glandular cancers increased in-step with national trends. Little evidence of variation in risk-adjusted survival presented over time or by Local Health District. The study illustrates the value of local registry data for describing local treatment and outcomes. They show the lower use of systemic therapies among residents of less accessible areas which warrants further investigation. Risk-adjusted treatment and outcomes did not vary by socio-economic status, suggesting equity in service delivery. These data are important for local evaluation and were not available from other sources. © 2017 John Wiley & Sons Ltd.

eRegistries: Electronic registries for maternal and child health.

PubMed

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

2016-01-19

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

Incidence, mortality and receptor status of breast cancer in African Caribbean women: Data from the cancer registry of Guadeloupe.

PubMed

Deloumeaux, J; Gaumond, S; Bhakkan, B; Manip M'Ebobisse, Nsome; Lafrance, W; Lancelot, Pierre; Vacque, D; Negesse, Y; Diedhiou, A; Kadhel, P

2017-04-01

Geographical disparities in breast cancer incidence and outcomes are reported worldwide. Women of African descent show lower incidence, higher mortality rates and earlier age of onset. We analyzed data from the cancer registry of Guadeloupe for the period 2008-2013. We describe breast cancer characteristics by molecular subtype, as well as estimated observed and net survival. We used Cox proportional hazard models to determine associations between cancer subtypes and death rate, adjusted for variables of interest. Overall, 1275 cases were recorded with a mean age at diagnosis of 57(±14) years. World standardized incidence and mortality were respectively 71.9/100,000 and 14.1/100,000 person-years. Age-specific incidence rates were comparable to European and US populations below the age of 45, and higher in Guadeloupean women aged between 45 and 55 years. Overall, 65.1% of patients were hormone receptor (HR)+ and 20.1% were HR-. Triple negative breast cancers (TNBC) accounted for 14% of all cases, and were more frequent in patients under 40 (21.6% vs. 13.4%, p=0.02). Five-year net survival was 84.9% [81.4-88.6]. It was higher for HR+/Her2+ and HR+/Her2- subtypes, and lower for HR-/Her2+ and TNBC patients. We found high age-specific incidence rates of breast cancer in women aged 45 to 55 years, which warrants further investigation in our population. However, this population of mainly African descent had good overall survival rates, and data according to subtypes are consistent with those reported internationally. These results may suggest that poorer survival in other African descent populations may not be an inherent feature of the disease but may be amenable to improvement. Copyright © 2017 Elsevier Ltd. All rights reserved.

Cancer spectrum in DNA mismatch repair gene mutation carriers: results from a hospital based Lynch syndrome registry.

PubMed

Pande, Mala; Wei, Chongjuan; Chen, Jinyun; Amos, Christopher I; Lynch, Patrick M; Lu, Karen H; Lucio, Laura A; Boyd-Rogers, Stephanie G; Bannon, Sarah A; Mork, Maureen E; Frazier, Marsha L

2012-09-01

The spectrum of cancers seen in a hospital based Lynch syndrome registry of mismatch repair gene mutation carriers was examined to determine the distribution of cancers and examine excess cancer risk. Overall there were 504 cancers recorded in 368 mutation carriers from 176 families. These included 236 (46.8 %) colorectal and 268 (53.2 %) extracolonic cancers. MLH1 mutation carriers had a higher frequency of colorectal cancers whereas MSH2, MSH6 and PMS2 mutation carriers had more extracolonic cancers although these differences were not statistically significant. Men had fewer extracolonic cancers than colorectal (45.3 vs. 54.7 %), whereas women had more extracolonic than colorectal cancers (59.0 vs. 41.0 %). The mean age at diagnosis overall for extracolonic cancers was older than for colorectal, 49.1 versus 44.8 years (P ≤ 0.001). As expected, the index cancer was colorectal in 58.1 % of patients and among the extracolonic index cancers, endometrial was the most common (13.8 %). A significant number of non-Lynch syndrome index cancers were recorded including breast (n = 5) prostate (n = 3), thyroid (n = 3), cervix (n = 3), melanoma (n = 3), and 1 case each of thymoma, sinus cavity, and adenocarcinoma of the lung. However, standardized incidence ratios calculated to assess excess cancer risk showed that only those cancers known to be associated with Lynch syndrome were significant in our sample. We found that Lynch syndrome patients can often present with cancers that are not considered part of Lynch syndrome. This has clinical relevance both for diagnosis of Lynch syndrome and surveillance for cancers of different sites during follow-up of these patients.

Time Trend Analysis of Cancer‏ Incidence in Caspian Sea, 2004 - 2009: A Population-based Cancer Registries Study (northern Iran).

PubMed

Salehiniya, Hamid; Ghobadi Dashdebi, Sakineh; Rafiemanesh, Hosein; Mohammadian-Hafshejani, Abdollah; Enayatrad, Mostafa

2016-01-01

Cancer is a major public health problem in the world. In Iran especially after a transition to a dynamic and urban community, the pattern of cancer has changed significantly. An important change occurred regarding the incidence of cancer at the southern shores of the Caspian Sea, including Gilan, Mazandaran and Golestan province. This study was designed it investigate the epidemiology and changes in trend of cancer incidence in the geographic region of the Caspian Sea (North of Iran). Data were collected from Cancer Registry Center report of Iran health deputy. Trends of incidence were analyzed by joinpoint regression analysis. During the study period year (2004-2009), 33,807 cases of cancer had been recorded in three provinces of Gilan, Mazandran and Golstan. Joinpoint analysis indicated a significant increase in age-standardized incidence rates (ASR) with an average annual percentage change (AAPC) 10.3, 8.5 and 5.2 in Gilan, Mazandaran and Golestan, respectively. The most common cancer in these provinces were correspondingly cancer of stomach, breast, skin, colorectal and bladder, respectively. The incidence of cancer tends to be increasing in North of Iran. These findings warrant the epidemiologic studies are helpful in planning preventive programs and recognition of risk factors.

Sick leave patterns among 5-year cancer survivors: a registry-based retrospective cohort study.

PubMed

Torp, Steffen; Nielsen, Roy A; Gudbergsson, Sævar B; Fosså, Sophie D; Dahl, Alv A

2012-09-01

The aims of this study were to observe the sick leave rates of cancer survivors for five consecutive years following a first lifetime diagnosis of invasive cancer and to identify socio-demographic and clinical predictors of sick leave taken in the fifth year after diagnosis. This registry study comprised 2,008 Norwegian individuals (18-61 years old) with their first lifetime diagnosis of invasive cancer in 1999 and alive in 2004 and a cancer-free control group (n = 3,240) matched by sex, age, educational level, and employment status in 1998. Sick leave was defined as at least one sick leave period >16 days within the year in question. A total of 75 % of the long-term cancer survivors (LTCSs) took sick leave within the first 12 months after their diagnosis. The sick leave rate stabilized at a slightly higher level in the following 4 years compared to the year before diagnosis, with approximately 23 % of the male and 31 % of the female LTCSs taking sick leave. Being single with children, having low education, working in health and social work sector, or having taken sick leave the year before diagnosis (1998) predicted the sick leave taken 5 years after diagnosis (2004) among LTCSs. Compared to the controls, LTCSs with rectal, lymphogenic, breast, or "other" types of cancer had significantly higher sick leave rates 5 years after diagnosis. Socio-demographic factors explained more of the variance in sick leave than did clinical factors. Employed LTCSs struggle with their ability to work 5 years after diagnosis. More research is needed to identify factors that would promote LTCSs' health and ability. A socioeconomic and work environmental perspective seems necessary for achieving effective occupational rehabilitation and preventing sick leave among LTCSs.

Long-term weight loss after colorectal cancer diagnosis is associated with lower survival: The Colon Cancer Family Registry.

PubMed

Kocarnik, Jonathan M; Hua, Xinwei; Hardikar, Sheetal; Robinson, Jamaica; Lindor, Noralane M; Win, Aung Ko; Hopper, John L; Figueiredo, Jane C; Potter, John D; Campbell, Peter T; Gallinger, Steven; Cotterchio, Michelle; Adams, Scott V; Cohen, Stacey A; Phipps, Amanda I; Newcomb, Polly A

2017-12-01

Body weight is associated with colorectal cancer (CRC) risk and survival, but to the authors' knowledge, the impact of long-term postdiagnostic weight change is unclear. Herein, the authors investigated whether weight change over the 5 years after a diagnosis of CRC is associated with survival. CRC cases diagnosed from 1997 to 2008 were identified through 4 population-based cancer registry sites. Participants enrolled within 2 years of diagnosis and reported their height and weight 2 years prior. Follow-up questionnaires were administered approximately 5 years after diagnosis. Associations between change in weight (in kg) or body mass index (BMI) with overall and CRC-specific survival were estimated using Cox regression analysis adjusted for age, sex, American Joint Committee on Cancer stage of disease, baseline BMI, nonsteroidal anti-inflammatory drug use, smoking, time between diagnosis and enrollment, and study site. At the 5-year postdiagnostic survey, 2049 participants reported higher (53%; median plus 5 kg), unchanged (12%), or lower (35%; median -4 kg) weight. Over a median of 5.1 years of subsequent follow-up (range, 0.3-9.9 years), 344 participants died (91 of CRC). Long-term weight loss (per 5 kg) was found to be associated with poorer overall survival (hazard ratio, 1.13; 95% confidence interval, 1.07-1.21) and CRC-specific survival (hazard ratio, 1.25; 95% confidence interval, 1.13-1.39). Significantly lower survival was similarly observed for relative weight loss (>5% vs ≤5% change), BMI reduction (per 1 unit), or BMI category change (overweight to normal vs remaining overweight). Weight loss 5 years after a diagnosis of CRC was found to be significantly associated with decreased long-term survival, suggesting the importance of avoiding weight loss in survivors of CRC. Future research should attempt to further evaluate this association, accounting for whether this weight change was intentional or represents a marker of declining health. Cancer 2017

Joint and independent effect of alcohol and tobacco use on the risk of subsequent cancer incidence among cancer survivors: A cohort study using cancer registries.

PubMed

Tabuchi, Takahiro; Ozaki, Koken; Ioka, Akiko; Miyashiro, Isao

2015-11-01

Drinking alcohol and smoking tobacco are major modifiable risk factors for cancer. However, little is known about whether these modifiable factors of cancer survivors are associated with subsequent primary cancer (SPC) incidence, regardless of the first cancer sites. 27,762 eligible cancer survivors diagnosed between 1985 and 2007 were investigated for SPC until the end of 2008, using hospital-based and population-based cancer registries. The association between drinking, smoking and combined drinking and smoking (interaction) at the time of the first cancer diagnosis and incidence of SPCs (i.e., all SPCs, alcohol-related, smoking-related and specific SPCs) was estimated by Poisson regression. Compared with never-drinker/never-smoker, the categories ever-drinker/ever-smoker, current-drinker/current-smoker and heavy-drinker/heavy-smoker had 43-108%, 51-126% and 167-299% higher risk for all, alcohol-related and tobacco-related SPCs, respectively. The interaction of drinking and smoking had significantly high incidence rate ratios (IRRs) for SPCs among ever-drinker/ever-smoker and current-drinker/current-smoker, although ever drinking did not show a significant risk. Ever-drinker/ever-smoker had also significantly higher IRRs for esophageal and lung SPCs than never-drinker/never-smoker. Among comprehensive cancer survivors, ever and current drinkers only had a SPC risk when combined with smoking, while ever and current smokers had a SPC risk regardless of drinking status. Heavy drinking and heavy smoking were considered to be independent additive SPC risk factors. To reduce SPC incidence, it may be necessary (i) to reduce or stop alcohol use, (ii) to stop tobacco smoking and (iii) dual users, especially heavy users, should be treated as a high-risk population for behavioral-change intervention. © 2015 UICC.

Informatics and data quality at collaborative multicenter Breast and Colon Cancer Family Registries

PubMed Central

McGarvey, Peter B; Ladwa, Sweta; Oberti, Mauricio; Dragomir, Anca Dana; Hedlund, Erin K; Tanenbaum, David Michael; Suzek, Baris E

2012-01-01

Quality control and harmonization of data is a vital and challenging undertaking for any successful data coordination center and a responsibility shared between the multiple sites that produce, integrate, and utilize the data. Here we describe a coordinated effort between scientists and data managers in the Cancer Family Registries to implement a data governance infrastructure consisting of both organizational and technical solutions. The technical solution uses a rule-based validation system that facilitates error detection and correction for data centers submitting data to a central informatics database. Validation rules comprise both standard checks on allowable values and a crosscheck of related database elements for logical and scientific consistency. Evaluation over a 2-year timeframe showed a significant decrease in the number of errors in the database and a concurrent increase in data consistency and accuracy. PMID:22323393

Tumor Registry Follow-Up at Army Medical Centers.

DTIC Science & Technology

1983-06-03

7a. NAME OF MONITORING ORGANIZATION U.S. AIW-BAYL) R UNIVERSITY (If applicable) GRAD PGM4 IN HEALTH CARE ADMIN HSHA-IHC 6c. ADDRESS (City, State, and...Cancer Program," The Hospital Medical Staff 11, No. 2 (February 1982): 12. 3Charles R . Smart, "The Commission on Cancer," Bulletin, American College of...Mq. 5- a- _ , . . . . - -, uo-----. *_ . . < -% - ’ . ’.- ."-. b-" -" ... ." .. .- r ’° ... V .r’v" - 36 Tumor Registry Letterman Army Medical Center

A population-based cross-sectional study of colorectal cancer screening practices of first-degree relatives of colorectal cancer patients

PubMed Central

2013-01-01

Background The aim of this study was to determine the proportions and predictors of first-degree relatives (FDRs) of colorectal cancer (CRC) patients (i) ever receiving any CRC testing and (ii) receiving CRC screening in accordance with CRC screening guidelines. Methods Colorectal cancer patients and their FDRs were recruited through the population-based Victorian Cancer Registry, Victoria, Australia. Seven hundred and seven FDRs completed telephone interviews. Of these, 405 FDRs were deemed asymptomatic and eligible for analysis. Results Sixty-nine percent of FDRs had ever received any CRC testing. First-degree relatives of older age, those with private health insurance, siblings and FDRs who had ever been asked about family history of CRC by a doctor were significantly more likely than their counterparts to have ever received CRC testing. Twenty-five percent of FDRs “at or slightly above average risk” were adherent to CRC screening guidelines. For this group, adherence to guideline-recommended screening was significantly more likely to occur for male FDRs and those with a higher level of education. For persons at “moderately increased risk” and “potentially high risk”, 47% and 49% respectively adhered to CRC screening guidelines. For this group, guideline-recommended screening was significantly more likely to occur for FDRs who were living in metropolitan areas, siblings, those married or partnered and those ever asked about family history of CRC. Conclusions A significant level of non-compliance with screening guidelines was evident among FDRs. Improved CRC screening in accordance with guidelines and effective systematic interventions to increase screening rates among population groups experiencing inequality are needed. Trial Registration Australian and New Zealand Clinical Trial Registry: ACTRN12609000628246 PMID:23305355

Lynch syndrome and cervical cancer.

PubMed

Antill, Yoland C; Dowty, James G; Win, Aung Ko; Thompson, Tina; Walsh, Michael D; Cummings, Margaret C; Gallinger, Steven; Lindor, Noralane M; Le Marchand, Loïc; Hopper, John L; Newcomb, Polly A; Haile, Robert W; Church, James; Tucker, Katherine M; Buchanan, Daniel D; Young, Joanne P; Winship, Ingrid M; Jenkins, Mark A

2015-12-01

Carriers of germline mutations in DNA mismatch repair (MMR) genes are at increased risk of several cancers including colorectal and gynecologic cancers (Lynch syndrome). There is no substantial evidence that these mutations are associated with an increased risk of cervical cancer. A total of 369 families with at least one carrier of a mutation in a MMR gene (133 MLH1, 174 MSH2, 35 MSH6 and 27 PMS2) were ascertained via population cancer registries or via family cancer clinics in Australia, New Zealand, Canada, and USA. Personal and family histories of cancer were obtained from participant interviews. Modified segregation analysis was used to estimate the hazard ratio (incidence rates for carriers relative to those for the general population), and age-specific cumulative risks of cervical cancer for carriers. A total of 65 cases of cervical cancer were reported (including 10 verified by pathology reports). The estimated incidence was 5.6 fold (95% CI: 2.3-13.8; p = 0.001) higher for carriers than for the general population with a corresponding cumulative risk to 80 years of 4.5% (95% CI: 1.9-10.7%) compared with 0.8% for the general population. The mean age at diagnosis was 43.1 years (95% CI: 40.0-46.2), 3.9 years younger than the reported USA population mean of 47.0 years (p = 0.02). Women with MMR gene mutations were found to have an increased risk of cervical cancer. Due to limited pathology verification we cannot be certain that a proportion of these cases were not lower uterine segment endometrial cancers involving the endocervix, a recognized cancer of Lynch syndrome. © 2015 UICC.

The outcomes and treatment burden of childhood acute myeloid leukaemia in Australia, 1997-2008: A report from the Australian Paediatric Cancer Registry.

PubMed

Foresto, Steven A; Youlden, Danny R; Baade, Peter D; Hallahan, Andrew R; Aitken, Joanne F; Moore, Andrew S

2015-09-01

Childhood acute myeloid leukaemia (AML) requires intensive therapy and is associated with survival rates that are substantially inferior to many other childhood malignancies. We undertook a retrospective analysis of Australian Paediatric Cancer Registry data from 1997 to 2008 together with a single-centre audit during the same period assessing burden on service delivery at a tertiary children's hospital (Royal Children's Hospital, Brisbane). Although survival improved from 54.3% (1997-2002) to 69.2% (2003-2008), childhood AML caused a disproportionate number of childhood cancer deaths, accounting for 5.5% of all childhood cancer diagnoses yet 7.9% of all childhood cancer mortality. Furthermore, treatment was associated with significant toxicity requiring intensive use of local health resources. Novel therapeutic strategies aimed at improving survival and reducing toxicity are urgently required. © 2015 Wiley Periodicals, Inc.

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

PubMed

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

2002-01-01

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

Web-Delivered Cognitive Behavioral Therapy for Distressed Cancer Patients: Randomized Controlled Trial.

PubMed

Chambers, Suzanne K; Ritterband, Lee M; Thorndike, Frances; Nielsen, Lisa; Aitken, Joanne F; Clutton, Samantha; Scuffham, Paul A; Youl, Philippa; Morris, Bronwyn; Baade, Peter D; Dunn, Jeff

2018-01-31

Web-based interventions present a potentially cost-effective approach to supporting self-management for cancer patients; however, further evidence for acceptability and effectiveness is needed. The goal of our research was to assess the effectiveness of an individualized Web-based cognitive behavioral therapy (CBT) intervention on improving psychological and quality of life outcomes in cancer patients with elevated psychological distress. A total of 163 distressed cancer patients (111 female, 68.1%) were recruited through the Queensland Cancer Registry and the Cancer Council Queensland Cancer Helpline and randomly assigned to either a Web-based tailored CBT intervention (CancerCope) (79/163) or a static patient education website (84/163). At baseline and 8-week follow-up we assessed primary outcomes of psychological and cancer-specific distress and unmet psychological supportive care needs and secondary outcomes of positive adjustment and quality of life. Intention-to-treat analyses showed no evidence of a statistically significant intervention effect on primary or secondary outcomes. However, per-protocol analyses found a greater decrease for the CancerCope group in psychological distress (P=.04), cancer-specific distress (P=.02), and unmet psychological care needs (P=.03) from baseline to 8 weeks compared with the patient education group. Younger patients were more likely to complete the CancerCope intervention. This online CBT intervention was associated with greater decreases in distress for those patients who more closely adhered to the program. Given the low costs and high accessibility of this intervention approach, even if only effective for subgroups of patients, the potential impact may be substantial. Australian New Zealand Clinical Trials Registry ACTRN12613001026718; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=364768&isReview=true (Archived by WebCite at http://www.webcitation.org/6uPvpcovl). ©Suzanne K Chambers, Lee M Ritterband

Performance of Self-Report to Establish Cancer Diagnoses in Disaster Responders and Survivors, World Trade Center Health Registry, New York, 2001–2007

PubMed Central

Cone, James E.; Alt, Abigail K.; Wu, David R.; Liff, Jonathan M.; Farfel, Mark R.; Stellman, Steven D.

2016-01-01

Objective Large-scale disasters may disrupt health surveillance systems, depriving health officials and researchers of timely and accurate information needed to assess disaster-related health effects and leading to use of less reliable self-reports of health outcomes. In particular, ascertainment of cancer in a population is ordinarily obtained through linkage of self-reported data with regional cancer registries, but exclusive reliance on these sources following a disaster may result in lengthy delays or loss of critical data. To assess the impact of such reliance, we validated self-reported cancer in a cohort of 59,340 responders and survivors of the World Trade Center disaster against data from 11 state cancer registries (SCRs). Methods We focused on residents of the 11 states with SCRs and on cancers diagnosed from September 11, 2001, to the date of their last survey participation. Medical records were also sought in a subset of 595 self-reported cancer patients who were not recorded in an SCR. Results Overall sensitivity and specificity of self-reported cancer were 83.9% (95% confidence interval [CI] 81.9, 85.9) and 98.5% (95% CI 98.4, 98.6), respectively. Site-specific sensitivities were highest for pancreatic (90.9%) and testicular (82.4%) cancers and multiple myeloma (84.6%). Compared with enrollees with true-positive reports, enrollees with false-negative reports were more likely to be non-Hispanic black (adjusted odds ratio [aOR] = 1.8, 95% CI 1.2, 2.9) or Asian (aOR=2.2, 95% CI 1.2, 4.1). Among the 595 cases not recorded in an SCR, 13 of 62 (21%) cases confirmed through medical records were reportable to SCRs. Conclusion Self-report of cancer had relatively high sensitivity among adults exposed to the World Trade Center disaster, suggesting that self-reports of other disaster-related conditions less amenable to external validation may also be reasonably valid. PMID:27252562

Automated Tumor Registry for Oncology. A VA-DHCP MUMPS application.

PubMed

Richie, S

1992-01-01

The VA Automated Tumor Registry for Oncology, Version 2, is a multifaceted, completely automated user-friendly cancer database. Easy to use modules include: Automatic Casefinding; Suspense Files; Abstracting and Printing; Follow-up; Annual Reports; Statistical Reports; Utility Functions.

Data quality at the Singapore Cancer Registry: An overview of comparability, completeness, validity and timeliness.

PubMed

Fung, Janice Wing Mei; Lim, Sandra Bee Lay; Zheng, Huili; Ho, William Ying Tat; Lee, Bee Guat; Chow, Khuan Yew; Lee, Hin Peng

2016-08-01

To provide a comprehensive evaluation of the quality of the data at the Singapore Cancer Registry (SCR). Quantitative and semi-quantitative methods were used to assess the comparability, completeness, accuracy and timeliness of data for the period of 1968-2013, with focus on the period 2008-2012. The SCR coding and classification systems follow international standards. The overall completeness was estimated at 98.1% using the flow method and 97.5% using the capture-recapture method, for the period of 2008-2012. For the same period, 91.9% of the cases were morphologically verified (site-specific range: 40.4-100%) with 1.1% DCO cases. The under-reporting in 2011 and 2012 due to timely publication was estimated at 0.03% and 0.51% respectively. This review shows that the processes in place at the SCR yields data which are internationally comparable, relatively complete, valid, and timely, allowing for greater confidence in the use of quality data in the areas of cancer prevention, treatment and control. Copyright © 2016 Elsevier Ltd. All rights reserved.

Diagnostic Validity of High-Density Barium Sulfate in Gastric Cancer Screening: Follow-up of Screenees by Record Linkage with the Osaka Cancer Registry

PubMed Central

Yamamoto, Kenyu; Yamazaki, Hideo; Kuroda, Chikazumi; Kubo, Tsugio; Oshima, Akira; Katsuda, Toshizo; Kuwano, Tadao; Takeda, Yoshihiro

2010-01-01

Background The use of high-density barium sulfate was recommended by the Japan Society of Gastroenterological Cancer Screening (JSGCS) in 2004. We evaluated the diagnostic validity of gastric cancer screening that used high-density barium sulfate. Methods The study subjects were 171 833 residents of Osaka, Japan who underwent gastric cancer screening tests at the Osaka Cancer Prevention and Detection Center during the period from 1 January 2000 through 31 December 2001. Screening was conducted using either high-density barium sulfate (n = 48 336) or moderate-density barium sulfate (n = 123 497). The subjects were followed up and their medical records were linked to those of the Osaka Cancer Registry through 31 December 2002. The results of follow-up during 1 year were defined as the gold standard, and test performance values were calculated. Results The sensitivity and specificity of the screening test using moderate-density barium sulfate were 92.3% and 91.0%, respectively, while the sensitivity and specificity of the high-density barium test were 91.8% and 91.4%, respectively. The results of area under receiver-operating-characteristic (ROC) curve analysis revealed no significant difference between the 2 screening tests. Conclusions Screening tests using high- and moderate-density barium sulfate had similar validity, as determined by sensitivity, specificity, and ROC curve analysis. PMID:20551581

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

PubMed

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

2016-01-08

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

Does Mortality Vary between Asian Subgroups in New Zealand: An Application of Hierarchical Bayesian Modelling

PubMed Central

Jatrana, Santosh; Richardson, Ken; Blakely, Tony; Dayal, Saira

2014-01-01

The aim of this paper was to see whether all-cause and cause-specific mortality rates vary between Asian ethnic subgroups, and whether overseas born Asian subgroup mortality rate ratios varied by nativity and duration of residence. We used hierarchical Bayesian methods to allow for sparse data in the analysis of linked census-mortality data for 25–75 year old New Zealanders. We found directly standardised posterior all-cause and cardiovascular mortality rates were highest for the Indian ethnic group, significantly so when compared with those of Chinese ethnicity. In contrast, cancer mortality rates were lowest for ethnic Indians. Asian overseas born subgroups have about 70% of the mortality rate of their New Zealand born Asian counterparts, a result that showed little variation by Asian subgroup or cause of death. Within the overseas born population, all-cause mortality rates for migrants living 0–9 years in New Zealand were about 60% of the mortality rate of those living more than 25 years in New Zealand regardless of ethnicity. The corresponding figure for cardiovascular mortality rates was 50%. However, while Chinese cancer mortality rates increased with duration of residence, Indian and Other Asian cancer mortality rates did not. Future research on the mechanisms of worsening of health with increased time spent in the host country is required to improve the understanding of the process, and would assist the policy-makers and health planners. PMID:25140523

A protocol for bladder cancer screening and medical surveillance among high-risk groups: The Drake Health Registry experience

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

Marsh, G.M.; Callahan, C.; Pavlock, D.

In 1986, the Drake Health Registry Study initiated bladder cancer screening for 366 persons at high risk because of occupational exposure to beta-naphthylamine. The Drake Health Registry Study screening protocol consists of urinalysis, Papanicolaou cytology, and quantitative fluorescence image analysis. A positive screening test qualifies participants for a full diagnostic evaluation. The screening protocol has been modified during the first 3 years of the program's existence to address unexpected patterns of test results and to incorporate advances in screening technology. The current protocol, which has a two-tiered screening schedule, has been utilized successfully for 15 months. Of the 26 positivemore » results to date most have been based on abnormal Papanicolaou cytology and/or quantitative fluorescence image analysis. Bladder abnormalities were cited among most of the 18 study members who underwent diagnostic evaluation, including chronic cystitis, inflammation, hyperplasia, and dysplasia. We conclude that the screening program is detecting very early changes in a relatively young cohort and that these persons must be monitored over a number of years to ensure adequate medical surveillance.« less

California Cancer Registry Enhancement for Breast Cancer Research

DTIC Science & Technology

1998-10-01

Manual for Staging of Cancer - Fourth Edition. J.B. Lippincott, Philadelphia PA, 1992. 4. O’Connor L, Prehn A, Topol B. Cancer treatment information...Mgmt. 1998; 25(1): 13-16. 17 APPENDIX I O’Connor L, Prehn , A, Topol B. Cancer treatment information collected from physicians’ records. Presentation at

Going the distance for certified cancer registrars.

PubMed

Backus, Amanda; Kolender, Ellen R

2009-01-01

Cancer registry departments are using electronic technology to solve the local and national Certified Tumor Registrar (CTR) shortages. As demand for CTRs continues to increase without an accompanied increase in the supply of qualified personnel, cancer registry departments are looking for new solutions to this growing local and national trend. In order to solve this problem, some cancer registries have started using telecommunication to fill the empty positions within their departments. This is the case at Roper St. Francis Healthcare (RSFH) in Charleston, SC, where Cancer Registry Manager, Ellen Kolender, RHIA, CTR, used telecommuting to fill one full-time and one part-time CTR position.

Revisiting New Zealand's "Unfortunate Experiment": Is medical ethics ever a thing done?

PubMed

Batt, Sharon

2018-01-01

An experiment dating from the 1960s in New Zealand has eerie similarities to research begun in 1976 in India. In both cases, women with evidence of early cervical cancer or pre-cancer went untreated, despite known treatments that could have prevented their condition from worsening. This Comment on carcinoma cervix research grew out of my reading of a new book by Ronald W Jones about the New Zealand experiment. Jones, a recently retired obstetrician/gynaecologist, worked at the hospital where the controversial research took place and was a whistleblower in the case. His book provides a meticulous account of internal struggles within the hospital over what has been called "the unfortunate experiment." Readers might fairly ask whether a detailed examination of a decades-old research scandal in New Zealand can usefully inform ethics debate in India today, where conditions are so different. I argue that Jones's account does indeed provide valuable insights for understanding research wrongdoing in other contexts, including low-income countries. Jones challenges some widespread assumptions about why such cases occur and how to combat them, as do several other recent analyses of research scandals.

Achieving interoperability for metadata registries using comparative object modeling.

PubMed

Park, Yu Rang; Kim, Ju Han

2010-01-01

Achieving data interoperability between organizations relies upon agreed meaning and representation (metadata) of data. For managing and registering metadata, many organizations have built metadata registries (MDRs) in various domains based on international standard for MDR framework, ISO/IEC 11179. Following this trend, two pubic MDRs in biomedical domain have been created, United States Health Information Knowledgebase (USHIK) and cancer Data Standards Registry and Repository (caDSR), from U.S. Department of Health & Human Services and National Cancer Institute (NCI), respectively. Most MDRs are implemented with indiscriminate extending for satisfying organization-specific needs and solving semantic and structural limitation of ISO/IEC 11179. As a result it is difficult to address interoperability among multiple MDRs. In this paper, we propose an integrated metadata object model for achieving interoperability among multiple MDRs. To evaluate this model, we developed an XML Schema Definition (XSD)-based metadata exchange format. We created an XSD-based metadata exporter, supporting both the integrated metadata object model and organization-specific MDR formats.

Cancer Risk in Women Treated with Fertility Drugs According to Parity status - A Registry-based Cohort Study

PubMed Central

Reigstad, Marte Myhre; Storeng, Ritsa; Myklebust, Tor Åge; Oldereid, Nan Birgitte; Omland, Anne Katerine; Robsahm, Trude Eid; Brinton, Louise Anette; Vangen, Siri; Furu, Kari; Larsen, Inger Kristin

2017-01-01

Background Long-term safety of assisted reproductive techniques (ART) is of interest as use is increasing. Cancer risk is known to be affected by parity. This study examined risk of cancer after fertility treatment, stratified by women’s parity. Methods Data was obtained on all women (n=1 353 724) born in Norway between 1960–1996. Drug exposure data (2004–2014) was obtained from the Norwegian Prescription Database [drugs used in ART and clomiphene citrate (CC)]. The Medical Birth Registry of Norway provided parity status. Hazard ratios were calculated for all site cancer, breast, cervical, endometrial, ovarian, colorectal, central nervous system, thyroid cancer and malignant melanoma. Results In 12 354 392 person-years of follow-up, 20 128 women were diagnosed with cancer. All-site cancer risk was (1.14, 1.03–1.26) and (1.10, 0.98–1.23) following CC and ART exposure respectively. For ovarian cancer, a stronger association was observed for both exposures in nulliparous (HR 2.49, 1.30–4.78, and HR 1.62, 0.78–3.35) versus parous women (HR 1.37, 0.64–2.96, and HR 0.87, 0.33–2.27). Elevated risk of endometrial cancers was observed for CC exposure in nulliparous women (4.59, 2.68–7.84 vs. 1.44, 0.63–3.31). Risk was elevated for breast cancer in parous women exposed to CC (1.26, 1.03–1.54) and among nulliparous women after ART treatment (2.19, 1.08–4.44). Conclusion CC appears associated with increased risk of ovarian and endometrial cancer. Elevations in risks of breast and thyroid cancer were less consistent across type of drug exposure and parity. Impact Continued monitoring of fertility treatments is warranted. PMID:28108444

Automated Tumor Registry for Oncology. A VA-DHCP MUMPS application.

PubMed Central

Richie, S.

1992-01-01

The VA Automated Tumor Registry for Oncology, Version 2, is a multifaceted, completely automated user-friendly cancer database. Easy to use modules include: Automatic Casefinding; Suspense Files; Abstracting and Printing; Follow-up; Annual Reports; Statistical Reports; Utility Functions. PMID:1482866

An initial melanoma diagnosis may increase the subsequent risk of prostate cancer: Results from the New South Wales Cancer Registry.

PubMed

Cole-Clark, D; Nair-Shalliker, V; Bang, A; Rasiah, K; Chalasani, V; Smith, D P

2018-05-08

Emerging evidence suggests that a diagnosis of cutaneous melanoma (CM) may be associated with prostate cancer (PC) incidence. We examined if the incidence of CM was associated with an increased subsequent risk of PC. We used data from the New South Wales Cancer Registry for all CM and PC cases diagnosed between January 1972 and December 2008. We calculated the age standardized incidence ratio (SIR) and 95% confidence intervals (95% CI) for PC incidence following a CM diagnosis, applying age- and calendar- specific rates to the appropriate person years at risk. We determined rate ratio (RR) and 95% CI of PC incidence according to specified socio-demographic categories and disease related characteristics, using a negative binomial model. There were 143,594 men diagnosed with PC or CM in the study period and of these 101,198 and 42,396 were diagnosed with PC and CM, respectively, as first primary cancers. Risk of PC incidence increased following CM diagnosis (n = 2,114; SIR = 1.25; 95% CI:1.20.8-1.31: p < 0.0001), with the increased risk apparent in men diagnosed with localised CM (n = 1,862;SIR = 1.26; 95% CI:1.20-1.32). CM diagnosis increased the subsequent risk of PC incidence. This raises the potential for future PC risk to be discussed with newly diagnosed males with CM.

A review of squamous cell vulvar cancers in Waikato region, New Zealand.

PubMed

Dass, Prashanth Hari; Kuper-Hommel, Marion Jj

2017-11-10

Squamous cell vulvar cancers (SCVC) are rare. Although management guidelines have recently been published, New Zealand studies presenting "real world" outcomes are limited. Retrospective single-centre review of SCVC diagnosed between 1 January 2000 and 31 August 2015. Clinical characteristics and outcomes were reviewed. Among 47 cases reviewed, 38 were ethnically European and 9 Māori. Cases identified as Stage 1 (16), Stage 2 (5), Stage 3 (17), Stage 4 (9). For Stages 1, 2, 3 and 4, (16, 4, 17 and 6) were managed by local excision; (9, 1, 14 and 2) by node dissection and (2, 1, 3 and 5) by chemoradiotherapy respectively. Wound cellulitis (10) and lymphedema (8) were the commonest acute and late complication, respectively. Seven patients were treated with 5-Fluorouracil and Mitomycin, and four received weekly Cisplatin. Grade 3 toxicities seen in five cases treated with 5-Fluorouracil and Mitomycin versus none in the Cisplatin group. No local recurrences observed in patients treated with chemoradiation. Patients with Age Adjusted Charlson Comorbid Index Score (ACCIS) <5 had better overall survival (OS) compared to scores ≥5 (60% versus 41%) with 33 months median follow-up. Five-year OS and disease-free specific survival was 73% and 94% (Stage 1), 40% and 60% (Stage 2), 44% and 59% (Stage 3) and 29% (Stage 4) respectively. We present "real world" outcomes of vulvar cancers in this older and comorbid population. Larger, prospective multi-centre studies are proposed.

Does Breast Cancer Drive the Building of Survival Probability Models among States? An Assessment of Goodness of Fit for Patient Data from SEER Registries

PubMed

Khan, Hafiz; Saxena, Anshul; Perisetti, Abhilash; Rafiq, Aamrin; Gabbidon, Kemesha; Mende, Sarah; Lyuksyutova, Maria; Quesada, Kandi; Blakely, Summre; Torres, Tiffany; Afesse, Mahlet

2016-12-01

Background: Breast cancer is a worldwide public health concern and is the most prevalent type of cancer in women in the United States. This study concerned the best fit of statistical probability models on the basis of survival times for nine state cancer registries: California, Connecticut, Georgia, Hawaii, Iowa, Michigan, New Mexico, Utah, and Washington. Materials and Methods: A probability random sampling method was applied to select and extract records of 2,000 breast cancer patients from the Surveillance Epidemiology and End Results (SEER) database for each of the nine state cancer registries used in this study. EasyFit software was utilized to identify the best probability models by using goodness of fit tests, and to estimate parameters for various statistical probability distributions that fit survival data. Results: Statistical analysis for the summary of statistics is reported for each of the states for the years 1973 to 2012. Kolmogorov-Smirnov, Anderson-Darling, and Chi-squared goodness of fit test values were used for survival data, the highest values of goodness of fit statistics being considered indicative of the best fit survival model for each state. Conclusions: It was found that California, Connecticut, Georgia, Iowa, New Mexico, and Washington followed the Burr probability distribution, while the Dagum probability distribution gave the best fit for Michigan and Utah, and Hawaii followed the Gamma probability distribution. These findings highlight differences between states through selected sociodemographic variables and also demonstrate probability modeling differences in breast cancer survival times. The results of this study can be used to guide healthcare providers and researchers for further investigations into social and environmental factors in order to reduce the occurrence of and mortality due to breast cancer. Creative Commons Attribution License

Quality assessment and improvement of nationwide cancer registration system in Taiwan: a review.

PubMed

Chiang, Chun-Ju; You, San-Lin; Chen, Chien-Jen; Yang, Ya-Wen; Lo, Wei-Cheng; Lai, Mei-Shu

2015-03-01

Cancer registration provides core information for cancer surveillance and control. The population-based Taiwan Cancer Registry was implemented in 1979. After the Cancer Control Act was promulgated in 2003, the completeness (97%) and data quality of cancer registry database has achieved at an excellent level. Hospitals with 50 or more beds, which provide outpatient and hospitalized cancer care, are recruited to report 20 items of information on all newly diagnosed cancers to the central registry office (called short-form database). The Taiwan Cancer Registry is organized and funded by the Ministry of Health and Welfare. The National Taiwan University has been contracted to operate the registry and organized an advisory board to standardize definitions of terminology, coding and procedures of the registry's reporting system since 1996. To monitor the cancer care patterns and evaluate the cancer treatment outcomes, central cancer registry has been reformed since 2002 to include detail items of the stage at diagnosis and the first course of treatment (called long-form database). There are 80 hospitals, which count for >90% of total cancer cases, involved in the long-form registration. The Taiwan Cancer Registry has run smoothly for >30 years, which provides essential foundation for academic research and cancer control policy in Taiwan. © The Author 2015. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

The Human Oocyte Preservation Experience (HOPE) a phase IV, prospective, multicenter, observational oocyte cryopreservation registry.

PubMed

Ezcurra, Diego; Rangnow, Jennifer; Craig, Maryellen; Schertz, Joan

2009-05-27

It has been recommended by the American Society of Clinical Oncology and the American Society of Reproductive Medicine that options to preserve fertility be presented at the outset of treatment for cancer. This recommendation may have arisen, in part, to the increasing survival of patients with cancer and the realization that certain forms of cancer treatment can lead to infertility. One option for these patients, particularly those with ethical or religious objections to freezing embryos is oocyte cryopreservation. However universal acceptance of these procedures has yet to be established, most likely due to a poor history of success and concerns that there has yet to be a comprehensive approach to evaluating these techniques. In light of this, a registry of patients undergoing oocyte cryopreservation, called the HOPE registry, is being implemented. The intent of the HOPE Registry is to enroll approximately 400 women of reproductive age who will undergo thawing/warming of oocytes and subsequent transfer. Data from the patients enrolled will be collected via a uniform, standardized form and will document important parameters such as demographics, laboratory procedures and outcomes, including following the outcomes of babies born for one year after birth. The results of the registry will be published on a yearly basis. A patient registry has been established in order to systematically document the techniques and outcomes of oocyte cryopreservation procedures. The results will be published in order to provide a widely accessible resource that will allow patients who are considering these procedures validated information in order to make informed decisions as to how their treatment will proceed.

Perioperative transfusion management in gastric cancer surgery: Analysis of the Spanish subset of the EURECCA oesophago-gastric cancer registry.

PubMed

Osorio, Javier; Jericó, Carlos; Miranda, Coro; Garsot, Elisenda; Luna, Alexis; Miró, Mónica; Santamaría, Maite; Artigau, Eva; Rodríguez-Santiago, Joaquín; Castro, Sandra; Feliu, Josep; Aldeano, Aurora; Olona, Carles; Momblan, Dulce; Ruiz, David; Galofré, Gonzalo; Pros, Inmaculada; García-Albéniz, Xabier; Lozano, Miguel; Pera, Manuel

2018-05-14

This study evaluated allogenic packed red blood cell (aPRBC) transfusion rates in patients undergoing resection for gastric cancer and the implementation of blood-saving protocols (BSP). Retrospective study of all gastric cancer patients operated on with curative intent in Catalonia and Navarra (2011-2013) and included in the Spanish subset of the EURECCA Oesophago-Gastric Cancer Registry. Hospitals with BSP were defined as those with a preoperative haemoglobin (Hb) optimisation circuit associated with restrictive transfusion strategies. Predictors of aPRBC transfusion were identified by multinomial logistic regression analysis. A total of 652 patients were included, 274 (42.0%) of which received aPRBC transfusion. Six of the 19 participating hospitals had BSP and treated 145 (22.2%) patients. Low Hb level at diagnosis (10 vs 12.4g/dL), ASA score III/IV, pT3-4, open surgery, associated visceral resection, and having being operated on in a hospital without BSP were predictors of aPRBC transfusion, while low Hb level, associated visceral resection, and non-BSP hospital remained predictors in the multivariate analysis. In case of comparable risk factors for aPRBC transfusion, there was a higher use of preoperative intravenous iron treatment (26.2% vs 13.2%) and a lower percentage of transfusions (31.7% vs 45%) in hospitals with BSP. The perioperative transfusion rate in gastric cancer was 42%. Hospitals with BSP showed a significant reduction of blood transfusions but treated only 22% of patients. Main predictors of aPRBC were low Hb level, associated visceral resection, and undergoing surgery at a hospital without BSP. Copyright © 2018 AEC. Publicado por Elsevier España, S.L.U. All rights reserved.

Complete prevalence of malignant primary brain tumors registry data in the United States compared with other common cancers, 2010

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

Zhang, Adah S.; Ostrom, Quinn T.; Kruchko, Carol

Complete prevalence proportions illustrate the burden of disease in a population. Here, this study estimates the 2010 complete prevalence of malignant primary brain tumors overall and by Central Brain Tumor Registry of the United States (CBTRUS) histology groups, and compares the brain tumor prevalence estimates to the complete prevalence of other common cancers as determined by the Surveillance, Epidemiology, and End Results Program (SEER) by age at prevalence (2010): children (0–14 y), adolescent and young adult (AYA) (15–39 y), and adult (40+ y).

Complete prevalence of malignant primary brain tumors registry data in the United States compared with other common cancers, 2010

DOE PAGES

Zhang, Adah S.; Ostrom, Quinn T.; Kruchko, Carol; ...

2016-12-29

Complete prevalence proportions illustrate the burden of disease in a population. Here, this study estimates the 2010 complete prevalence of malignant primary brain tumors overall and by Central Brain Tumor Registry of the United States (CBTRUS) histology groups, and compares the brain tumor prevalence estimates to the complete prevalence of other common cancers as determined by the Surveillance, Epidemiology, and End Results Program (SEER) by age at prevalence (2010): children (0–14 y), adolescent and young adult (AYA) (15–39 y), and adult (40+ y).

Measurement of the Inter-Rater Reliability Rate Is Mandatory for Improving the Quality of a Medical Database: Experience with the Paulista Lung Cancer Registry.

PubMed

Lauricella, Leticia L; Costa, Priscila B; Salati, Michele; Pego-Fernandes, Paulo M; Terra, Ricardo M

2018-06-01

Database quality measurement should be considered a mandatory step to ensure an adequate level of confidence in data used for research and quality improvement. Several metrics have been described in the literature, but no standardized approach has been established. We aimed to describe a methodological approach applied to measure the quality and inter-rater reliability of a regional multicentric thoracic surgical database (Paulista Lung Cancer Registry). Data from the first 3 years of the Paulista Lung Cancer Registry underwent an audit process with 3 metrics: completeness, consistency, and inter-rater reliability. The first 2 methods were applied to the whole data set, and the last method was calculated using 100 cases randomized for direct auditing. Inter-rater reliability was evaluated using percentage of agreement between the data collector and auditor and through calculation of Cohen's κ and intraclass correlation. The overall completeness per section ranged from 0.88 to 1.00, and the overall consistency was 0.96. Inter-rater reliability showed many variables with high disagreement (>10%). For numerical variables, intraclass correlation was a better metric than inter-rater reliability. Cohen's κ showed that most variables had moderate to substantial agreement. The methodological approach applied to the Paulista Lung Cancer Registry showed that completeness and consistency metrics did not sufficiently reflect the real quality status of a database. The inter-rater reliability associated with κ and intraclass correlation was a better quality metric than completeness and consistency metrics because it could determine the reliability of specific variables used in research or benchmark reports. This report can be a paradigm for future studies of data quality measurement. Copyright © 2018 American College of Surgeons. Published by Elsevier Inc. All rights reserved.

Validation of prostate-specific antigen laboratory values recorded in Surveillance, Epidemiology, and End Results registries.

PubMed

Adamo, Margaret Peggy; Boten, Jessica A; Coyle, Linda M; Cronin, Kathleen A; Lam, Clara J K; Negoita, Serban; Penberthy, Lynne; Stevens, Jennifer L; Ward, Kevin C

2017-02-15

Researchers have used prostate-specific antigen (PSA) values collected by central cancer registries to evaluate tumors for potential aggressive clinical disease. An independent study collecting PSA values suggested a high error rate (18%) related to implied decimal points. To evaluate the error rate in the Surveillance, Epidemiology, and End Results (SEER) program, a comprehensive review of PSA values recorded across all SEER registries was performed. Consolidated PSA values for eligible prostate cancer cases in SEER registries were reviewed and compared with text documentation from abstracted records. Four types of classification errors were identified: implied decimal point errors, abstraction or coding implementation errors, nonsignificant errors, and changes related to "unknown" values. A total of 50,277 prostate cancer cases diagnosed in 2012 were reviewed. Approximately 94.15% of cases did not have meaningful changes (85.85% correct, 5.58% with a nonsignificant change of <1 ng/mL, and 2.80% with no clinical change). Approximately 5.70% of cases had meaningful changes (1.93% due to implied decimal point errors, 1.54% due to abstract or coding errors, and 2.23% due to errors related to unknown categories). Only 419 of the original 50,277 cases (0.83%) resulted in a change in disease stage due to a corrected PSA value. The implied decimal error rate was only 1.93% of all cases in the current validation study, with a meaningful error rate of 5.81%. The reasons for the lower error rate in SEER are likely due to ongoing and rigorous quality control and visual editing processes by the central registries. The SEER program currently is reviewing and correcting PSA values back to 2004 and will re-release these data in the public use research file. Cancer 2017;123:697-703. © 2016 American Cancer Society. © 2016 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society.

Surgery for metastases for esophageal-gastric cancer in the real world: Data from the AGAMENON national registry.

PubMed

Carmona-Bayonas, Alberto; Jiménez-Fonseca, Paula; Echavarria, Isabel; Sánchez Cánovas, Manuel; Aguado, Gema; Gallego, Javier; Custodio, Ana; Hernández, Raquel; Viudez, Antonio; Cano, Juana María; Martínez de Castro, Eva; Macías, Ismael; Martín Carnicero, Alfonso; Garrido, Marcelo; Mangas, Monserrat; Álvarez Manceñido, Felipe; Visa, Laura; Azkarate, Aitor; Ramchandani, Avinash; Fernández Montes, Ana; Longo, Federico; Sánchez, Ana; Pimentel, Paola; Limón, María Luisa; Arias, David; Cacho Lavin, Diego; Sánchez Bayona, Rodrigo; Cerdá, Paula; García Alfonso, Pilar

2018-03-31

The effect of surgery for metastases in patients with esophagogastric cancer is unknown, given the lack of randomized clinical trials; likewise, the criteria for selecting eligible patients remain to be determined. This registry evaluates the results of patients with advanced adenocarcinoma of the stomach, distal esophagus, or gastro-esophageal junction from 32 centers. To assess selection criteria and prognostic factors, a state arrival extended Markov proportional hazards (PH) model was used. 1792 subjects were analyzed, 5% of whom (n = 92) underwent surgery for metastasis. The most common surgeries were peritoneal (29%), hepatic (24%), and distant lymph nodes (11%). Subjects chosen for metastasectomy had higher survival rates, HR 0.34 (95% CI, 0.06-0.80, p = 0.021). Patients who underwent surgery had a mOS since metastasectomy of 16.7 months (95% CI, 12.5-22.4). The 1- and 3-year relapse rates following R0 resection were 58% and 65%, respectively. Median time since R0 metastasectomy until relapse was 8.4 months (95% CI, 7.6-23.7). The 3-year OS after surgery was 30.6% (95% CI, 19.3-40.4). Duration of chemotherapy prior to surgery (months) increased mortality (HR 1.04 [95% CI, 1.01-1.07]), p = 0.009. The only significant interaction involved the use of anti-HER2 therapy. The AGAMENON registry suggests that subjects with limited metastatic disease, selected on a clinical basis, can benefit from early surgeries. Prospective trials are needed to confirm these data. Copyright © 2018 Elsevier Ltd, BASO ~ The Association for Cancer Surgery, and the European Society of Surgical Oncology. All rights reserved.

Cancer Risk in Women Treated with Fertility Drugs According to Parity Status-A Registry-based Cohort Study.

PubMed

Reigstad, Marte Myhre; Storeng, Ritsa; Myklebust, Tor Åge; Oldereid, Nan Birgitte; Omland, Anne Katerine; Robsahm, Trude Eid; Brinton, Louise Annette; Vangen, Siri; Furu, Kari; Larsen, Inger Kristin

2017-06-01

Background: Long-term safety of assisted reproductive techniques (ART) is of interest as their use is increasing. Cancer risk is known to be affected by parity. This study examined the risk of cancer after fertility treatment, stratified by women's parity. Methods: Data were obtained from all women ( n = 1,353,724) born in Norway between 1960 and 1996. Drug exposure data (2004-2014) were obtained from the Norwegian Prescription Database (drugs used in ART and clomiphene citrate). The Medical Birth Registry of Norway provided parity status. HRs were calculated for all site cancer, breast, cervical, endometrial, ovarian, colorectal, central nervous system, thyroid cancer, and malignant melanoma. Results: In 12,354,392 person-years of follow-up, 20,128 women were diagnosed with cancer. All-site cancer risk was 1.14 [95% confidence interval (95% CI), 1.03-1.26] and 1.10 (95% CI, 0.98-1.23) after clomiphene citrate and ART exposure, respectively. For ovarian cancer, a stronger association was observed for both exposures in nulliparous (HR, 2.49; 95% CI, 1.30-4.78; and HR, 1.62; 95% CI, 0.78-3.35) versus parous women (HR, 1.37; 95% CI, 0.64-2.96; and HR, 0.87; 95% CI, 0.33-2.27). Elevated risk of endometrial cancers was observed for clomiphene citrate exposure in nulliparous women (HR, 4.49; 95% CI, 2.66-7.60 vs. HR, 1.52; 95% CI, 0.67-3.42). Risk was elevated for breast cancer in parous women exposed to clomiphene citrate (HR, 1.26; 95% CI, 1.03-1.54) for thyroid cancer and among nulliparous women after ART treatment (HR, 2.19; 95% CI, 1.08-4.44). Conclusions: Clomiphene citrate appears associated with increased risk of ovarian and endometrial cancer. Elevations in risks of breast and thyroid cancer were less consistent across type of drug exposure and parity. Impact: Continued monitoring of fertility treatments is warranted. Cancer Epidemiol Biomarkers Prev; 26(6); 953-62. ©2017 AACR . ©2017 American Association for Cancer Research.

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

PubMed

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

2016-12-01

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

Informatics Tools and Methods to Enhance U.S. Cancer Surveillance Research, UG3/UH3 | Informatics Technology for Cancer Research (ITCR)

Cancer.gov

The goal of this Funding Opportunity Announcement (FOA) is to advance surveillance science by supporting the development of new and innovative tools and methods for more efficient, detailed, timely, and accurate data collection by cancer registries. Specifically, the FOA seeks applications for projects to develop, adapt, apply, scale-up, and validate tools and methods to improve the collection and integration cancer registry data and to expand the data items collected. Population-based central cancer registries (a partnership must involve at least two different registries).

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

PubMed

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

2016-12-01

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

Characterizing inflammatory breast cancer among Arab Americans in the California, Detroit and New Jersey Surveillance, Epidemiology and End Results (SEER) registries (1988-2008).

PubMed

Hirko, Kelly A; Soliman, Amr S; Banerjee, Mousumi; Ruterbusch, Julie; Harford, Joe B; Chamberlain, Robert M; Graff, John J; Merajver, Sofia D; Schwartz, Kendra

2013-12-01

Inflammatory breast cancer (IBC) is characterized by an apparent geographical distribution in incidence, being more common in North Africa than other parts of the world. Despite the rapid growth of immigrants to the United States from Arab nations, little is known about disease patterns among Arab Americans because a racial category is rarely considered for this group. The aim of this study was to advance our understanding of the burden of IBC in Arab ethnic populations by describing the proportion of IBC among different racial groups, including Arab Americans from the Detroit, New Jersey and California Surveillance, Epidemiology and End Results (SEER) registries. We utilized a validated Arab surname algorithm to identify women of Arab descent from the SEER registries. Differences in the proportion of IBC out of all breast cancer and IBC characteristics by race and menopausal status were evaluated using chi-square tests for categorical variables, t-tests and ANOVA tests for continuous variables, and log-rank tests for survival data. We modeled the association between race and IBC among all women with breast cancer using hierarchical logistic regression models, adjusting for individual and census tract-level variables. Statistically significant differences in the proportion of IBC out of all breast cancers by race were evident. In a hierarchical model, adjusting for age, estrogen and progesterone receptor, human epidermal growth receptor 2, registry and census-tract level education, Arab-Americans (OR=1.5, 95% CI=1.2,1.9), Hispanics (OR=1.2, 95% CI=1.1,1.3), Non-Hispanic Blacks (OR=1.3, 95% CI=1.2, 1.4), and American Indians/Alaskans (OR=1.9, 95% CI=1.1, 3.4) had increased odds of IBC, while Asians (OR=0.6, 95% CI=0.6, 0.7) had decreased odds of IBC as compared to Non-Hispanic Whites. IBC may be more common among certain minority groups, including Arab American women. Understanding the descriptive epidemiology of IBC by race may generate hypotheses about risk

Young adult breast cancer patients have a poor prognosis independent of prognostic clinicopathological factors: a study from the Japanese Breast Cancer Registry.

PubMed

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

2016-11-01

The aim of this study was to investigate whether young age at onset of breast cancer is an independent prognostic factor in patients from the Japanese Breast Cancer Registry, after adjustment of known clinicopathological prognostic factors. Of the 53,670 patients registered between 2004 and 2006 and surveyed after a 5-year follow-up prognosis, 25,898 breast cancer patients (48.3 %), who were obtained prognostic data, were examined. Clinicopathological factors were compared between young adult (YA; <35 years), middle-aged adult (MA; 35-50 years), and older adult (OA; >50 years) patients. Five-year disease-free survival (DFS) and overall survival (OS) rates were studied. YA patients were associated with an advanced TNM stage and aggressive characteristics (e.g. human epidermal growth factor receptor 2 (HER2)-positive or oestrogen receptor (ER)-negative breast cancers) compared to MA and OA patients (P < 0.001). The 5-year DFS and OS rates were 79.4 % and 90.8, 88.5 and 95.0 %, and 87.8 % and 91.6 % for YA, MA, and OA patients, respectively. From the multivariable regression analysis, young age at onset was confirmed as an independent prognostic factor for both DFS (hazard ratio 1.73, 95 % confidence interval 1.42-2.10; P < 0.001) and OS (hazard ratio 1.58, 95 % confidence interval 1.16-2.15; P = 0.004). Young age at onset is an independent negative prognostic factor in breast cancer. Further studies are required to develop new therapeutic strategies for YA breast cancer patients.

Breast cancer trends differ by ethnicity: a report from the South African National Cancer Registry (1994-2009).

PubMed

Singh, E; Joffe, M; Cubasch, H; Ruff, P; Norris, S A; Pisa, P T

2017-02-01

To describe breast cancer (BC) incidence and mortality by ethnicity in South Africa (SA). Sources of data included the South African National Cancer Registry (NCR) pathology-based reports (1994–2009) and Statistics South Africa (SSA) mortality data (1997–2009). Numbers of cases, age-standardised incidence rates (ASIR) and lifetime risk (LR) were extracted from the NCR database for 1994–2009. Age-specific incidence rates were calculated for five-year age categories. The direct method of standardisation was employed to calculate age-standardised mortality rates (ASMR) using mortality data. Between 1994 and 2009, there were 85 561 female BC. For the Black, Coloured and Asian groups, increases in ASIR and LR were observed between 1994 and 2009. In 2009, the ASIR for the total population, Blacks, Whites, Coloureds and Asians were 26.9, 18.7, 50.2, 40.9 and 51.2 per 100 000, respectively. For Asians, an increase in proportion of BC as a percentage of all female cancers was observed between 1994 and 2002 (11.1%) and continued to increase to 2009 (a further 4.5%). Whites and Asians presented higher incidences of BC at earlier ages compared with Blacks and Coloureds in 2009. In 1998, there were 1618 BC deaths in SA compared with 2784 deaths in 2009. ASMR between 1997 and 2004 increased but stabilised thereafter. This paper demonstrated that SA BC incidence rates are similar to other countries in the region, but lower than other countries with similar health systems. Ethnic differences in BC trends were observed. However, the reasons for observed ethnic differences are unclear. © The Author 2016. Published by Oxford University Press on behalf of the European Public Health Association. All rights reserved.

Second generation registry framework.

PubMed

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

2014-01-01

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

Second generation registry framework

PubMed Central

2014-01-01

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

non-Hodgkin's lymphoma and occupation in Sweden: a registry based analysis.

PubMed Central

Linet, M S; Malker, H S; McLaughlin, J K; Weiner, J A; Blot, W J; Ericsson, J L; Fraumeni, J F

1993-01-01

Incidence of non-Hodgkin's lymphoma in different employment categories was evaluated from the Swedish Cancer-Environment Registry, which links cancer incidence during 1961 to 1979 with occupational information from the 1960 census. New associations were found for men employed in shoemaking and shoe repair, porcelain and earthenware industries, education, and other white collar occupations. Several findings supported associations found in other countries, including excesses among woodworkers, furniture makers, electric power plant workers, farmers, dairy workers, lorry drivers, and other land transport workers. Risks were not increased among chemists, chemical or rubber manufacturing workers, or petrochemical refinery workers. Caution must be used in drawing causal inferences from these linked registry data because information on exposure and duration of employment is not available. Nevertheless, this study has suggested new clues to possible occupational determinants of non-Hodgkin's lymphoma. PMID:8431395

JBEI Registry

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

Ham, Timothy

2008-12-01

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

Breast interest group faculty of radiation oncology: Australian and New Zealand patterns of practice survey on breast radiotherapy.

PubMed

Nguyen, Kimberley; Mackenzie, Penny; Allen, Angela; Dreosti, Marcus; Morgia, Marita; Zissiadis, Yvonne; Lamoury, Gilian; Windsor, Apsara

2017-08-01

This patterns of practice study was conducted on behalf of the RANZCR Breast Interest Group in order to document current radiotherapy practices for breast cancer in Australia and New Zealand. The survey identifies variations and highlights potential contentious aspects of radiotherapy management of breast cancer. A fifty-eight question survey was disseminated via the Survey Monkey digital platform to 388 Radiation Oncologists in Australia and New Zealand. In total, 156 responses were received and collated. Areas of notable consensus among respondents included hypofractionation (77.3% of respondents would 'always' or 'sometimes' consider hypofractionation in the management of ductal carcinoma in-situ and 99.3% in early invasive breast cancer); margin status in early breast cancer (73.8% believe a clear inked margin is sufficient and does not require further surgery) and use of bolus in post-mastectomy radiotherapy (PMRT) (91.1% of participants use bolus in PMRT). Areas with a wider degree of variability amongst respondents included regional nodal irradiation and components of radiotherapy planning and delivery (examples include the technique used for delivery of boost and frequency of bolus application for PMRT). The results of these patterns of practice survey informs radiation oncologists in Australia and New Zealand of the current clinical practices being implemented by their peers. The survey identifies areas of consensus and contention, the latter of which may lead to a development of research trials and/or educational activities to address these areas of uncertainty. © 2016 The Royal Australian and New Zealand College of Radiologists.

Italian cancer figures, report 2009: Cancer trend (1998-2005).

PubMed

2009-01-01

the aim of this collaborative project of the Italian Network of Cancer Registries (Airtum; www.registri-tumori.it) was to analyse cancer incidence and mortality trends in Italy with special reference to the period 1998-2005. the study was based on the Airtum database, which collects and checks data from all the Airtum registries. The present study was based on 20 general and 2 specific populationbased cancer registries. Overall, we analysed 818,017 incident cases and 342,444 cancer deaths for the time period 1998-2005. Seventy percent of the analysed population was from the North of Italy, 17% from the Centre, and 13% from the South. A joinpoint analysis was carried out to detect the point in time where the trend changed; trends are described by means of the estimated annual percent change (APC), with appropriate 95% confidence intervals. Crude and standardized incidence and mortality rates were computed for 36 cancer sites, for both sexes, three age-classes (0-49, 50-69 and 70+ years), and three geographic areas (North, Centre, and South of Italy). Specific chapters are devoted to long-term trends (1986-2005), differences among age-groups, and international comparisons. In 1998-2005, cancer mortality for all sites showed a statistically significant decrease among men (APC - 1.7) and women (- 0.8). Mortality significantly decreased in both sexes for stomach cancer, rectum cancer, liver cancer, and Hodgkin lymphoma. Mortality also decreased among men for cancers of the upper aerodigestive tract, oesophagus, lung, prostate, urinary bladder, and leukaemia. Among women mortality decreased for cancers of the colon, bone, breast, and uterus not otherwise specified. An increase in mortality was recorded for lung cancer among women (+1.5) and melanoma among men (+2.6). Incidence for all cancers together (except non-melanoma skin cancers) increased among men (APC +0.3) and remained stable among women. Cancer sites which showed increasing incidence were thyroid and melanoma

Astronomy in New Zealand

NASA Astrophysics Data System (ADS)

Hearnshaw, John B.

2006-01-01

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

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

PubMed Central

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

2017-01-01

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

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

PubMed

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

2017-01-01

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

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. © 2016 UICC.

Cancer incidence and mortality in China, 2014

PubMed Central

Chen, Wanqing; Sun, Kexin; Zheng, Rongshou; Zeng, Hongmei; Zhang, Siwei; Xia, Changfa; Yang, Zhixun; Li, He; Zou, Xiaonong; He, Jie

2018-01-01

Background National Central Cancer Registry of China (NCCRC) updated nationwide cancer statistics using population-based cancer registry data in 2014 collected from all available cancer registries. Methods In 2017, 449 cancer registries submitted cancer registry data in 2014, among which 339 registries’ data met the criteria of quality control and were included in analysis. These cancer registries covered 288,243,347 population, accounting for about 21.07% of the national population in 2014. Numbers of nationwide new cancer cases and deaths were estimated using calculated incidence and mortality rates and corresponding national population stratified by area, sex, age group and cancer type. The world Segi’s population was applied for age-standardized rates. Results A total of 3,804,000 new cancer cases were diagnosed, the crude incidence rate was 278.07/100,000 (301.67/100,000 in males, 253.29/100,000 in females) and the age-standardized incidence rate by world standard population (ASIRW) was 186.53/100,000. Calculated age-standardized incidence rate was higher in urban areas than in rural areas (191.6/100,000 vs. 179.2/100,000). South China had the highest cancer incidence rate while Southwest China had the lowest incidence rate. Cancer incidence rate was higher in female for population between 20 to 54 years but was higher in male for population younger than 20 years or over 54 years. A total of 2,296,000 cancer deaths were reported, the crude mortality rate was 167.89/100,000 (207.24/100,000 in males, 126.54/100,000 in females) and the age-standardized mortality rate by world standard population (ASMRW) was 106.09/100,000. Calculated age-standardized mortality rate was higher in rural areas than in urban areas (110.3/100,000 vs. 102.5/100,000). East China had the highest cancer mortality rate while North China had the lowest mortality rate. The mortality rate in male was higher than that in female. Common cancer types and major causes of cancer death differed

Pregnancy Registries

MedlinePlus

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

The cardiac sonography workforce in New Zealand.

PubMed

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

2013-05-01

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

The cardiac sonography workforce in New Zealand

PubMed Central

White, Steve; Poppe, Katrina; Whalley, Gillian

2015-01-01

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

[Epidemiology and incidence of primary lung cancer in a region with low tobacco consumption: Guadeloupe (French West Indies). Data from the cancer registry 2008-2009].

PubMed

Cadelis, G; Kaddah, S; Bhakkan, B; Quellery, M; Deloumeaux, J

2013-09-01

Few data are available about primary lung cancer in the Caribbean. The purpose of this study was to provide, for the first time, the epidemiological and clinical characteristics of primary lung cancer in the archipelago of Guadeloupe (French West Indies). From the cancer registry, we identified in this retrospective study, all incident cases of primary lung cancer that had occurred between 1st January 2008 and 31st December 2009 in Guadeloupe. Over the period from 2008 to 2009, 106 patients with primary lung cancer were identified. Males accounted for 72.6% and the women for 27.4%. Mean incidence rate over the 2 years was estimated at 13.4/100000 persons-years (95% CI: [6.0-20.8]) in men (world standardized) and 4.2/100000 persons-years (95% CI: [0.3-8.1]) in women. The median age at initial diagnosis was 65 years for men and 66 years for women. We noted a proportion of 61.3% of current smokers, 4.7% of passive smokers and 34% of non-smokers. The comorbidities were present in 41% of patients. Non-small cell lung cancer (NSCLC) accounted for 88.7% of lung cancers and small cell lung cancer for 7.5%. The most common histological type was adenocarcinoma (43%) followed by squamous cell (24%). Stage III and IV patients accounted for 64.1% of individuals with NSCLC. The incidence of primary lung cancer in Guadeloupe is relatively low compared to metropolitan France. Guadeloupe is also a French department where the rate of tobacco consumption is one of the lowest. Copyright © 2013 SPLF. Published by Elsevier Masson SAS. All rights reserved.

Meat intake, cooking methods, dietary carcinogens, and colorectal cancer risk: findings from the Colorectal Cancer Family Registry.

PubMed

Joshi, Amit D; Kim, Andre; Lewinger, Juan Pablo; Ulrich, Cornelia M; Potter, John D; Cotterchio, Michelle; Le Marchand, Loic; Stern, Mariana C

2015-06-01

Diets high in red meat and processed meats are established colorectal cancer (CRC) risk factors. However, it is still not well understood what explains this association. We conducted comprehensive analyses of CRC risk and red meat and poultry intakes, taking into account cooking methods, level of doneness, estimated intakes of heterocyclic amines (HCAs) that accumulate during meat cooking, tumor location, and tumor mismatch repair proficiency (MMR) status. We analyzed food frequency and portion size data including a meat cooking module for 3364 CRC cases, 1806 unaffected siblings, 136 unaffected spouses, and 1620 unaffected population-based controls, recruited into the CRC Family Registry. Odds ratios (OR) and 95% confidence intervals (CI) for nutrient density variables were estimated using generalized estimating equations. We found no evidence of an association between total nonprocessed red meat or total processed meat and CRC risk. Our main finding was a positive association with CRC for pan-fried beefsteak (P(trend) < 0.001), which was stronger among MMR deficient cases (heterogeneity P = 0.059). Other worth noting associations, of borderline statistical significance after multiple testing correction, were a positive association between diets high in oven-broiled short ribs or spareribs and CRC risk (P(trend) = 0.002), which was also stronger among MMR-deficient cases, and an inverse association with grilled hamburgers (P(trend) = 0.002). Our results support the role of specific meat types and cooking practices as possible sources of human carcinogens relevant for CRC risk. © 2015 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.