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

Science.gov (United States)

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

Linking Medicare, Medicaid, and Cancer Registry Data...

Data.gov (United States)

U.S. Department of Health & Human Services — Linking Medicare, Medicaid, and Cancer Registry Data to Study the Burden of Cancers in West Virginia In the United States, the elderly carry an unequal burden of...

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

Science.gov (United States)

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.

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

Science.gov (United States)

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

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

Science.gov (United States)

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.

Science.gov (United States)

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

Science.gov (United States)

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.

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

Science.gov (United States)

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.

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

Science.gov (United States)

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

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

Science.gov (United States)

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

Colon and rectal cancer survival by tumor location and microsatellite instability: the Colon Cancer Family Registry.

Science.gov (United States)

Phipps, Amanda I; Lindor, Noralane M; Jenkins, Mark A; Baron, John A; Win, Aung Ko; Gallinger, Steven; Gryfe, Robert; Newcomb, Polly A

2013-08-01

Cancers in the proximal colon, distal colon, and rectum are frequently studied together; however, there are biological differences in cancers across these sites, particularly in the prevalence of microsatellite instability. We assessed the differences in survival by colon or rectal cancer site, considering the contribution of microsatellite instability to such differences. This is a population-based prospective cohort study for cancer survival. This study was conducted within the Colon Cancer Family Registry, an international consortium. Participants were identified from population-based cancer registries in the United States, Canada, and Australia. Information on tumor site, microsatellite instability, and survival after diagnosis was available for 3284 men and women diagnosed with incident invasive colon or rectal cancer between 1997 and 2002, with ages at diagnosis ranging from 18 to 74. Cox regression was used to calculate hazard ratios for the association between all-cause mortality and tumor location, overall and by microsatellite instability status. Distal colon (HR, 0.59; 95% CI, 0.49-0.71) and rectal cancers (HR, 0.68; 95% CI, 0.57-0.81) were associated with lower mortality than proximal colon cancer overall. Compared specifically with patients with proximal colon cancer exhibiting no/low microsatellite instability, patients with distal colon and rectal cancers experienced lower mortality, regardless of microsatellite instability status; patients with proximal colon cancer exhibiting high microsatellite instability had the lowest mortality. Study limitations include the absence of stage at diagnosis and cause-of-death information for all but a subset of study participants. Some patient groups defined jointly by tumor site and microsatellite instability status are subject to small numbers. Proximal colon cancer survival differs from survival for distal colon and rectal cancer in a manner apparently dependent on microsatellite instability status. These

Costing Tool for International Cancer Registries

Centers for Disease Control (CDC) Podcasts

2016-11-21

A health economist at CDC talks about a new tool for estimating how much it costs to run cancer registries in developing countries.  Created: 11/21/2016 by National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP).   Date Released: 11/21/2016.

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

Science.gov (United States)

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

Breast cancer survival rate according to data of cancer registry and death registry systems in Bushehr province, 2001-2013

Directory of Open Access Journals (Sweden)

Zahra Rampisheh

2015-09-01

Full Text Available Background: Breast cancer is the most common female cancer worldwide. Survival rate of breast cancer, especially as an indicator of the successful implementation of screening, diagnosis and treatment programs, has been at the center of attention of public health experts Material and Methods: In a survival study, the records of breast cancer cases in cancer registry system of Bushehr Province were extracted during 2001, March to 2013, September. These records were linked and matched with records of death registry system. After determining patients, status regarding being alive or dead, survival analysis was done. Life table, Kaplan-Mayer analysis, log rank and Breslow tests were used for computing and comparing survival rates. Results: In 300 recorded breast cancer cases, mean and standard deviation of age was 51.26±13.87. Survival rates were 95, 88, 78, 73 and 68 percent since the first year through the fifth year, respectively. Mean survival was 87.20 months (95% CI= 81.28- 93.12. There was no significant difference in mean survival regarding age and different geographical areas. Conclusion: Although survival rates of registered breast cancer patients in Bushehr Province are similar to other provinces, they are far from those of developed countries. This situation demands more extensive efforts regarding public education and improving the process of diagnosis, treatment and care of patients especially during first two years after diagnosis.

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

Science.gov (United States)

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.

Occurance of head and neck cancers at the Nairobi Cancer Registry ...

African Journals Online (AJOL)

Occurance of head and neck cancers at the Nairobi Cancer Registry in Kenya 2000-2002. AK Limo, A Rugutt-Korir, JO Gichana, EA Dimba, ML Chindia, GZ Mutuma. Abstract. No Abstract. African Journal of Oral Health Sciences Vol. 5 (1) 2007: pp. 2-4. Full Text: EMAIL FULL TEXT EMAIL FULL TEXT · DOWNLOAD FULL ...

Establishment of the Fox Chase Network Breast Cancer Risk Registry

National Research Council Canada - National Science Library

Daly, Mary

1997-01-01

.... The development of the Fox Chase Cancer Center Breast Cancer Risk Registry was proposed to facilitate research in the epidemiologic and genetic predictors of disease and will permit evaluation...

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

Directory of Open Access Journals (Sweden)

Sanson-Fisher Rob

2011-01-01

Full Text Available Abstract 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.

A Suitable Approach to Estimate Cancer Incidence in Area without Cancer Registry

International Nuclear Information System (INIS)

Mitton, N.; Colonna, M.; Colonna, M.

2011-01-01

Objective. Use of cancer cases from registries and PMSI claims database to estimate Department-specific incidence of four major cancers. Methods. Case extraction used principal diagnosis then surgery codes. PMSI cases/registry cases ratios for 2004 were modelled then Department-specific incidence for 2007 estimated using these ratios and 2007 PMSI cases. Results. For 2007, only colon-rectum and breast cancer estimations were satisfactorily validated for infra national incidence not ovary and kidney cancers. For breast, the estimated national incidence was 50,578 cases and the incidence rate 98.6 cases per 100,000 person per year. For colon-rectum, incidence was 21,172 in men versus 18,327 in women and the incidence rate 38 per 100,000 versus 24.8. For ovary, the estimated incidence was 4,637 and the rate 8.6 per 100,000. For kidney, incidence was 6,775 in men versus 3,273 in women and the rate 13.3 per 100.000 versus 5.2. Conclusion. Incidence estimation using PMSI patient identifiers proved encouraging though still dependent on the assumption of uniform cancer treatments and coding.

Age-specific interval breast cancers in Japan. Estimation of the proper sensitivity of screening using a population-based cancer registry

International Nuclear Information System (INIS)

Suzuki, Akihiko; Kuriyama, Shinichi; Kawai, Masaaki

2008-01-01

The age-specific sensitivity of a screening program was investigated using a population-based cancer registry as a source of false-negative cancer cases. A population-based screening program for breast cancer was run using either clinical breast examinations (CBE) alone or mammography combined with CBE in the Miyagi Prefecture from 1997 to 2002. Interval cancers were newly identified by linking the screening records to the population-based cancer registry to estimate the number of false-negative cases of screening program. Among 112071 women screened by mammography combined with CBE, the number of detected cancers, false-negative cases and the sensitivity were 289, 22 and 92.9%, respectively, based on the reports from participating municipalities. The number of newly found false-negative cases and corrected sensitivity when using the registry were 34 and 83.8%, respectively. In detected cancers, the sensitivity of screening by mammography combined with CBE in women ranging from 40 to 49 years of age based on a population-based cancer registry was much lower than that in women 50-59 and 60-69 years of age (40-49: 18, 71.4%, 50-59: 19, 85.8%, 60-69: 19, 87.2%). These data suggest that the accurate outcome of an evaluation of breast cancer screening must include the use of a population-based cancer registry for detecting false-negative cases. Screening by mammography combined with CBE may therefore not be sufficiently sensitive for women ranging from 40 to 49 years of age. (author)

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

Science.gov (United States)

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.

Childhood Cancer Incidence in India Betweem 2012 and 2014: Report of a Population-based Cancer Registry.

Science.gov (United States)

Das, Suman; Paul, Dilip Kumar; Anshu, Kumar; Bhakta, Subhajit

2017-12-15

To provide an overview of childhood cancer incidence in India between 2012-2014. Secondary data analysis on age-adjusted rates of cancer incidence for children (0-14 years) were collected from the report of the National Cancer Registry Programme in the year 2016. Age-adjusted rates of childhood cancer incidence ranged from 18.5 per million in the state of Nagaland to 235.3 per million in Delhi for boys. The rates were 11.4 per million in East Khasi Hill district and 152.3 per million in Delhi for girls. Leukemia was the most predominant cancer for both boys and girls. Lymphoma was the second most common cancer in boys, and brain tumors in girls. Childhood cancer incidence is increasing in India compared to population-based cancer registry survey of 2009-2011. Cancers are mostly affecting 0-4 years age group, and there is a rising trend of Non-Hodgkin's lymphoma.

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

Science.gov (United States)

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.

Science.gov (United States)

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

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

Science.gov (United States)

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.

[Implantation of a hospital registry of hereditary nonpolyposis colorectal cancer].

Science.gov (United States)

Reyes, J; Ginard, D; Barranco, L; Escarda, A; Vanrell, M; Mariño, Z; Garau, I; Llompart, A; Gayà, J; Obrador, A

2006-10-01

Identification of patients with hereditary nonpolyposis colorectal cancer (HNPCC) can allow colorectal cancer (CRC) prevention through colonoscopy and polypectomies. The purpose of this study was to report the clinical characteristics of HNPCC families in our registry. HNPCC was identified using the Amsterdam criteria. Familial clustering of CRC and extracolonic cancers were investigated in families. Individuals at risk were offered annual colonoscopy, starting from the age of 25 years. Twelve HNPCC families were identified. There were 46 cases of CRC in 38 patients. The mean age at diagnosis of CRC was 45.4 +/- 12.7 years (range 25-73 years). In patients with documented disease, right-sided tumors predominated. Eleven patients with extracolonic cancer were identified (six tumors located in the endometrium). Of 43 at-risk individuals, 29 accepted surveillance. Our data confirm the importance of the family history in identifying HNPCC. This study confirms previously described characteristics in HNPCC, namely, early age at onset of CRC, right-sided predominance, multiple synchronous and metachronous neoplasms, and increased extracolonic cancers. This is the first study of clinical data in a Spanish HNPCC registry.

Cancer registries and monitoring the impact of prophylactic human papillomavirus vaccines: the potential role.

Science.gov (United States)

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

2008-11-15

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.

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

Science.gov (United States)

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.

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

Science.gov (United States)

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.

Stage III & IV colon and rectal cancers share a similar genetic profile: a review of the Oregon Colorectal Cancer Registry.

Science.gov (United States)

Gawlick, Ute; Lu, Kim C; Douthit, Miriam A; Diggs, Brian S; Schuff, Kathryn G; Herzig, Daniel O; Tsikitis, Vassiliki L

2013-05-01

Determining the molecular profile of colon and rectal cancers offers the possibility of personalized cancer treatment. The purpose of this study was to determine whether known genetic mutations associated with colorectal carcinogenesis differ between colon and rectal cancers and whether they are associated with survival. The Oregon Colorectal Cancer Registry is a prospectively maintained, institutional review board-approved tissue repository with associated demographic and clinical information. The registry was queried for any patient with molecular analysis paired with clinical data. Patient demographics, tumor characteristics, microsatellite instability status, and mutational analysis for p53, AKT, BRAF, KRAS, MET, NRAS, and PIK3CA were analyzed. Categorical variables were compared using chi-square tests. Continuous variables between groups were analyzed using Mann-Whitney U tests. Kaplan-Meier analysis was used for survival studies. Comparisons of survival were made using log-rank tests. The registry included 370 patients: 69% with colon cancer and 31% with rectal cancer. Eighty percent of colon cancers and 68% of rectal cancers were stages III and IV. Mutational analysis found no significant differences in detected mutations between colon and rectal cancers, except that there were significantly more BRAF mutations in colon cancers compared with rectal cancers (10% vs 0%, P colon versus rectal cancers when stratified by the presence of KRAS, PIK3CA, and BRAF mutations. Stage III and IV colon and rectal cancers share similar molecular profiles, except that there were significantly more BRAF mutations in colon cancers compared with rectal cancers. Copyright © 2013 Elsevier Inc. All rights reserved.

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

Science.gov (United States)

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.

Melanoma of the skin in the Danish Cancer Registry and the Danish Melanoma Database

DEFF Research Database (Denmark)

Pedersen, Sidsel Arnspang; Schmidt, Sigrun Alba Johannesdottir; Klausen, Siri

2018-01-01

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...

Genetic variations in SMAD7 are associated with colorectal cancer risk in the colon cancer family registry.

Directory of Open Access Journals (Sweden)

Xuejuan Jiang

Full Text Available Recent genome-wide studies identified a risk locus for colorectal cancer at 18q21, which maps to the SMAD7 gene. Our objective was to confirm the association between SMAD7 SNPs and colorectal cancer risk in the multi-center Colon Cancer Family Registry.23 tagging SNPs in the SMAD7 gene were genotyped among 1,592 population-based and 253 clinic-based families. The SNP-colorectal cancer associations were assessed in multivariable conditional logistic regression.Among the population-based families, both SNPs rs12953717 (odds ratio, 1.29; 95% confidence interval, 1.12-1.49, and rs11874392 (odds ratio, 0.80; 95% confidence interval, 0.70-0.92 were associated with risk of colorectal cancer. These associations were similar among the population- and the clinic-based families, though they were significant only among the former. Marginally significant differences in the SNP-colorectal cancer associations were observed by use of nonsteroidal anti-inflammatory drugs, cigarette smoking, body mass index, and history of polyps.SMAD7 SNPs were associated with colorectal cancer risk in the Colon Cancer Family Registry. There was evidence suggesting that the association between rs12953717 and colorectal cancer risk may be modified by factors such as smoking and use of nonsteroidal anti-inflammatory drugs.

Cancer incidence in Arkhangelskaja Oblast in northwestern Russia. The Arkhangelsk Cancer Registry

Directory of Open Access Journals (Sweden)

Tkatsjov Anatolij V

2005-07-01

Full Text Available Abstract Background Data concerning incidence and prevalence of cancer in the different regions of Russia have traditionally not been provided on a basis that facilitated comparison with data from countries in western parts of Europe. The oncological hospital in Arkhangelsk, in co-operation with Universitetet i Tromsø (Norway, has established a population based cancer registry for Arkhangelskaja Oblast (AO. AO is an administrative unit with 1.3 million inhabitants in northwestern Russia. The aim of this investigation was to assess the content and quality of the AO cancer registry (AKR, and to present the site-specific cancer-incidence rates in AO in the period 1993–2001. Methods The population in this study consisted of all individuals registered as residents of AO. All new cancer cases in the period 1993 – 2001, registered the AKR, were included in the study (ICD-10: C00-C95, except for C77-78. The annual gender and age-group-specific population figures were obtained from the AO statistics office. Results A total of 34 697 cases of primary cancers were included. The age-adjusted (world standard incidence rate for all sites combined was 164/100 000 for women and 281/100 000 for men. The highest incidence was for cancer of the trachea, bronchus and lung (16.3% of all cases, whereof 88.6 % of the cases were among men. Among women, cancer of the breast constituted 15.9 percent of all cases. The age-adjusted incidences of the most frequent cancer sites among men were: lung (77.4/100 000; stomach (45.9; rectum (13.4; oesophagus (13.0; colon (12.2; bladder (11.6; and prostate cancer (11.1. Among women they were: breast (28.5; stomach (19.7; colon (12.2; and ovary cancer (9.0. Conclusion Our findings confirm and strengthen the indication that the incidences of stomach, larynx, liver, pancreas, prostate, colon, bladder and melanoma cancer are quite different in male populations in Russia compared to many other European countries. Among women, most

Thyroid Cancer and Tumor Collaborative Registry (TCCR).

Science.gov (United States)

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.

Cancer incidence in Bucaramanga Metropolitan Area, 2000-2004. First five years report from population based cancer registry of Metropolitan Area of Bucaramanga.

Directory of Open Access Journals (Sweden)

Erika Eliana Meza Durán

2007-11-01

Full Text Available Cancer is one of the most common chronic diseases that cause high morbidity and mortality. In the evaluation of all illnessand its impact on the community, a surveillance system becomes necessary to allows us to know its incidence. Cancersurveillance is achieved by the population-based cancer registry. Methodology: The Population Based Cancer Registry ofMetropolitan Area of Bucaramanga (RPC-AMB collected information from the years 2000 to 2004, in patients with anymalignant cancer the which include both invasive and in situ behavior in addition to reside within this geographical area . TheCancer Registry also collects data on brain and nervous system tumors classified as benign or those that have uncertainbehavior. Basal cell cancers of the skin were included during the two first years as well as all the intraepithelial neoplasm ofthe cervix. Active collections of information at all sources by registry staff were made (Hospitals, Health care institutions,especially oncology centers and Pathology and Hematology Laboratories and some specialist in oncology attention. Theinclusion approaches are verified and collects data on specific sociodemographic information (age, gender, residence, placeof birth, etc. and on the anatomic site of the tumor, the cell type of the cancer, behavior and extension on each individualdiagnosed with cancer. Each case was coded using the International Classification of Diseases Oncology Third Edition (ICDO-3, for topographical and morphological code. The data was entered into a computer with CanReg-4 software that is aconfigurable computer program designed for cancer registration in population-based registries and was provided as aservice by the Descriptive Epidemiology Unit to members of the International Association of Cancer Registries. This softwareprovides the number of cancer cases (frequency and the incidence rates. The quality control included exhaustiveness of thecases and information, verification of the

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

Science.gov (United States)

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.

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

NARCIS (Netherlands)

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

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

Quality of record linkage in a highly automated cancer registry that relies on encrypted identity data

Directory of Open Access Journals (Sweden)

Schmidtmann, Irene

2016-06-01

Full Text Available Objectives: In the absence of unique ID numbers, cancer and other registries in Germany and elsewhere rely on identity data to link records pertaining to the same patient. These data are often encrypted to ensure privacy. Some record linkage errors unavoidably occur. These errors were quantified for the cancer registry of North Rhine Westphalia which uses encrypted identity data. Methods: A sample of records was drawn from the registry, record linkage information was included. In parallel, plain text data for these records were retrieved to generate a gold standard. Record linkage error frequencies in the cancer registry were determined by comparison of the results of the routine linkage with the gold standard. Error rates were projected to larger registries.Results: In the sample studied, the homonym error rate was 0.015%; the synonym error rate was 0.2%. The F-measure was 0.9921. Projection to larger databases indicated that for a realistic development the homonym error rate will be around 1%, the synonym error rate around 2%.Conclusion: Observed error rates are low. This shows that effective methods to standardize and improve the quality of the input data have been implemented. This is crucial to keep error rates low when the registry’s database grows. The planned inclusion of unique health insurance numbers is likely to further improve record linkage quality. Cancer registration entirely based on electronic notification of records can process large amounts of data with high quality of record linkage.

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

Science.gov (United States)

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

Leukaemia and occupation: a New Zealand Cancer Registry-based case-control Study.

NARCIS (Netherlands)

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

2009-01-01

BACKGROUND: To examine the association between occupation and leukaemia. METHODS: We interviewed 225 cases (aged 20-75 years) notified to the New Zealand Cancer Registry during 2003-04, and 471 controls randomly selected from the Electoral Roll collecting demographic details, information on

Evaluation of LexisNexis Batch Solutions in the New York State Cancer Registry

OpenAIRE

Pradhan, Eva; Boscoe, Francis P.

2014-01-01

Using Lexis Nexis Batch Solutions, the New York State Cancer Registry was able to identify substantial numbers of missing addresses, birth dates, and social security numbers, for persons diagnosed as far back as 1976.

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

Science.gov (United States)

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

Epidemiologic contributions to recent cancer trends among HIV-infected people in the United States.

Science.gov (United States)

Robbins, Hilary A; Shiels, Meredith S; Pfeiffer, Ruth M; Engels, Eric A

2014-03-27

HIV-infected people have elevated risk for some cancers. Changing incidence of these cancers over time may reflect changes in three factors: HIV population demographic structure (e.g. age distribution), general population (background) cancer rates, and HIV-associated relative risks. We assessed the contributions of these factors to time trends for 10 cancers during 1996-2010. Population-based registry linkage study. We applied Poisson models to data from the U.S. HIV/AIDS Cancer Match Study to estimate annual percentage changes (APCs) in incidence rates of AIDS-defining cancers [ADCs: Kaposi sarcoma, non-Hodgkin lymphoma (NHL), and cervical cancer] and seven non-AIDS-defining cancers (NADCs). We evaluated HIV-infected cancer trends with and without adjustment for demographics, trends in background rates, and trends in standardized incidence ratios (SIRs, to capture relative risk). Cancer rates among HIV-infected people rose over time for anal (APC 3.8%), liver (8.5%), and prostate (9.8%) cancers, but declined for Kaposi sarcoma (1996-2000: -29.3%; 2000-2010: -7.8%), NHL (1996-2003: -15.7%; 2003-2010: -5.5%), cervical cancer (-11.1%), Hodgkin lymphoma (-4.0%), and lung cancer (-2.8%). Breast and colorectal cancer incidence did not change over time. Based on comparison to adjusted models, changing demographics contributed to trends for Kaposi sarcoma and breast, colorectal, liver, lung, and prostate cancers (all P cancers. SIRs declined for ADCs, Hodgkin lymphoma (APC -3.2%), and lung cancer (-4.4%). Demographic shifts influenced several cancer trends among HIV-infected individuals. Falling relative risks largely explained ADC declines, while background incidence contributed to some NADC trends.

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

Science.gov (United States)

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.

Recruiting families at risk for hereditary breast and ovarian cancer from a statewide cancer registry: a methodological study.

Science.gov (United States)

Katapodi, Maria C; Duquette, Deb; Yang, James J; Mendelsohn-Victor, Kari; Anderson, Beth; Nikolaidis, Christos; Mancewicz, Emily; Northouse, Laurel L; Duffy, Sonia; Ronis, David; Milliron, Kara J; Probst-Herbst, Nicole; Merajver, Sofia D; Janz, Nancy K; Copeland, Glenn; Roberts, Scott

2017-03-01

Cancer genetic services (counseling/testing) are recommended for women diagnosed with breast cancer younger than 45 years old (young breast cancer survivors-YBCS) and at-risk relatives. We present recruitment of YBCS, identification and recruitment of at-risk relatives, and YBCS willingness to contact their cancer-free, female relatives. A random sample of 3,000 YBCS, stratified by race (Black vs. White/Other), was identified through a population-based cancer registry and recruited in a randomized trial designed to increase use of cancer genetic services. Baseline demographic, clinical, and family characteristics, and variables associated with the Theory of Planned Behavior (TPB) were assessed as predictors of YBCS' willingness to contact at-risk relatives. The 883 YBCS (33.2% response rate; 40% Black) who returned a survey had 1,875 at-risk relatives and were willing to contact 1,360 (72.5%). From 853 invited at-risk relatives (up to two relatives per YBCS), 442 responded (51.6% response rate). YBCS with larger families, with a previous diagnosis of depression, and motivated to comply with recommendations from family members were likely to contact a greater number of relatives. Black YBCS were more likely to contact younger relatives and those living further than 50 miles compared to White/Other YBCS. It is feasible to recruit diverse families at risk for hereditary cancer from a population-based cancer registry. This recruitment approach can be used as a paradigm for harmonizing processes and increasing internal and external validity of large-scale public health genomic initiatives in the era of precision medicine.

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

Science.gov (United States)

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

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.

Science.gov (United States)

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

Accuracy of Self-Reported Breast Cancer Information among Women from the Ontario Site of the Breast Cancer Family Registry

International Nuclear Information System (INIS)

Barisic, A.; Glendon, G.; Andrulis, I. L.; Knight, J. A.; Barisic, A.; Knight, J. A.; Glendon, G.; Weerasooriya, N.; Andrulis, I. L.

2012-01-01

Obtaining complete medical record information can be challenging and expensive in breast cancer studies. The current literature is limited with respect to the accuracy of self-report and factors that may influence this. We assessed the agreement between self-reported and medical record breast cancer information among women from the Ontario site of the Breast Cancer Family Registry. Women aged 20-69 years diagnosed with incident breast cancer 1996-1998 were identified from the Ontario Cancer Registry, sampled on age and family history. We calculated kappa statistics, proportion correct, sensitivity, specificity, and positive and negative predictive values and conducted unconditional logistic regression to examine whether characteristics of the women influenced agreement. The proportions of women who correctly reported having received a broad category of therapy (hormone therapy, chemotherapy, radiation, or surgery) as well as sensitivity and specificity were above 90%, and the kappa statistics were above 0.80. The specific type of hormonal or chemotherapy was reported with low-to-moderate agreement. Aside from recurrence, no factors were consistently associated with agreement. Thus, most women were able to accurately report broad categories of treatment but not necessarily specific treatment types. The finding of this study can aid researchers in the use and design of self-administered treatment questionnaires

Childhood leukaemia in Europe after Chernobyl: Five year follow-up of cancer registry populations

Energy Technology Data Exchange (ETDEWEB)

Parkin, D M; Black, R J; Kramarova, E [International Agency for Research on Cancer, Lyon (France); Clayton, D [University of Cambridge, Cambridge (United Kingdom)

1997-09-01

The European Childhood Leukaemia-Lymphoma Incidence Study (ECLIS) aims to monitor trends in the incidence of these diseases in European populations in relation to estimated exposures to radioactive material released at the time of the Chernobyl accident. Thirty-six cancer registries in 23 countries are collaborating in ECLIS, coordinated by the International Agency for Research on Cancer (IARC). 3 figs, 3 tabs.

Childhood leukaemia in Europe after Chernobyl: Five year follow-up of cancer registry populations

International Nuclear Information System (INIS)

Parkin, D.M.; Black, R.J.; Kramarova, E.; Clayton, D.

1997-01-01

The European Childhood Leukaemia-Lymphoma Incidence Study (ECLIS) aims to monitor trends in the incidence of these diseases in European populations in relation to estimated exposures to radioactive material released at the time of the Chernobyl accident. Thirty-six cancer registries in 23 countries are collaborating in ECLIS, coordinated by the International Agency for Research on Cancer (IARC). 3 figs, 3 tabs

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

OpenAIRE

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

2013-01-01

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 ...

Breast cancer as heterogeneous disease: contributing factors and carcinogenesis mechanisms.

Science.gov (United States)

Kravchenko, Julia; Akushevich, Igor; Seewaldt, Victoria L; Abernethy, Amy P; Lyerly, H Kim

2011-07-01

The observed bimodal patterns of breast cancer incidence in the U.S. suggested that breast cancer may be viewed as more than one biological entity. We studied the factors potentially contributing to this phenomenon, specifically focusing on how disease heterogeneity could be linked to breast carcinogenesis mechanisms. Using empirical analyses and population-based biologically motivated modeling, age-specific patterns of incidence of ductal and lobular breast carcinomas from the SEER registry (1990-2003) were analyzed for heterogeneity and characteristics of carcinogenesis, stratified by race, stage, grade, and estrogen (ER)/progesterone (PR) receptor status. The heterogeneity of breast carcinoma age patterns decreased after stratification by grade, especially for grade I and III tumors. Stratification by ER/PR status further reduced the heterogeneity, especially for ER(+)/PR(-) and ER(-)/(-) tumors; however, the residual heterogeneity was still observed. The number of rate-limiting events of carcinogenesis and the latency of ductal and lobular carcinomas differed, decreasing from grade I to III, with poorly differentiated tumors associated with the least number of carcinogenesis stages and the shortest latency. Tumor grades play important role in bimodal incidence of breast carcinoma and have distinct mechanisms of carcinogenesis. Race and cancer subtype could play modifying role. ER/PR status contributes to the observed heterogeneity, but is subdominant to tumor grade. Further studies on sources of "remaining" heterogeneity of population with breast cancer (such as genetic/epigenetic characteristics) are necessary. The results of this study could suggest stratification rather than unification of breast cancer prevention strategies, risk assessment, and treatment.

Cancer in ANCA-Associated Glomerulonephritis: A Registry-Based Cohort Study

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Sanjeevan Sriskandarajah

2017-01-01

Full Text Available Background. Immunosuppressive therapy for antineutrophil cytoplasmic antibody-associated vasculitis has been associated with increased malignancy risk. Objectives. To quantify the cancer risk associated with contemporary cyclophosphamide-sparing protocols. Methods. Patients from the Norwegian Kidney Biopsy Registry between 1988 and 2012 who had biopsy-verified pauci-immune glomerulonephritis and positive antineutrophil cytoplasmic antibody (ANCA serology were included. Standardised incidence ratios (SIRs were calculated to compare the study cohort with the general population. Results. The study cohort included 419 patients. During 3010 person-years, cancer developed in 41 patients (9.79%; the expected number of cancer cases was 37.5 (8.95%. The cohort had SIRs as follows: 1.09, all cancer types (95% CI, 0.81 to 1.49; 0.96, all types except nonmelanoma skin cancer (95% CI, 0.69 to 1.34; 3.40, nonmelanoma skin cancer (95% CI, 1.62 to 7.14; 3.52, hematologic cancer (95% CI, 1.32 to 9.37; 2.12, posttransplant cancer (95% CI, 1.01 to 4.44; and 1.53, during the 1–5-year follow-up after diagnosis (95% CI, 1.01 to 2.32. Conclusions. Cancer risk did not increase significantly in this cohort with ANCA-associated glomerulonephritis. However, increased risk of nonmelanoma skin cancer, posttransplant cancer, and hematologic cancer indicates an association between immunosuppression and malignancy.

Estimates of thyroid cancer incidence at district level using cancer registries data and linkage of two sources of medico-administrative data, France, 2007-2011

International Nuclear Information System (INIS)

Chatignoux, Edouard; Decool, Elsa; Maria, Florence de; Uhry, Zoe; Remontet, Laurent; Grosclaude, Pascale; Guizard, Anne-Valerie; Delafosse, Patricia; Colonna, Marc

2016-01-01

Objectives - In France, cancer registries cover 20% of the population. The objective of this study was to provide estimations of thyroid cancer incidence at the administrative district level ( 'departements') over the 2007-2011 period in metropolitan France, using registries data and medico-administrative data. Methods - A medico-administrative indicator 'HUL' [Hospital union LLD] combining Hospital discharge data and health insurance data on Long Duration Diseases (LDD) was constructed. It counts the number of people with a new LDD or hospitalized for thyroid cancer. The principle of the estimation consists in adjusting HUL data at the district level by the Incidence/HUL ratio of the registry area. The accuracy of the estimations was first evaluated in the districts covered by registries by comparing estimated to observed incidence. Results - The preliminary phase of the assessment confirmed that the HUL/Incidence ratio were sufficiently accurate to provide district level estimates of thyroid cancer incidence over the whole territory. The district variability of the estimations for the 2007-2011 period was important: the 5. and 95. percentiles of the distribution of standardized incidence rates across districts were 2.8 and 7.1 for 100,000 in men, and 8.3 and 21.2 for 100,000 in women. Areas with significant over-incidence were observed in the South-East, and on the South-West coast of France compared to the national level. Conclusion - This study confirms the magnitude of geographical variability of thyroid cancer incidence between French administrative districts. It also confirms the value of cross-referencing medico-administrative data to estimate the incidence at an administrative district level. (authors)

Breast Cancer in Ghana: Demonstrating the Need for Population-Based Cancer Registries in Low- and Middle-Income Countries

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Abigail S. Thomas

2017-12-01

Full Text Available Purpose: Breast cancer, the most common cancer worldwide, is the leading cause of cancer mortality in Ghanaian women. Previous studies find Ghanaian women are diagnosed at a younger age and at more advanced stages (III and IV, and have tumors with characteristics similar to African American women. We sought to remedy gaps in knowledge about breast cancer survival in Ghana and its relation to demographic and biologic factors of the tumors at diagnosis to assist in cancer control and registration planning. Methods: Individuals with a breast cancer diagnosis who sought care at Komfo Anokye Teaching Hospital from 2009 to 2014 were identified via medical records. Follow-up telephone interviews were held to assess survival. Kaplan-Meier plots and Cox proportional hazards models assessed survival associated with clinical and demographic characteristics. Results: A total of 223 patients completed follow-up and were analyzed. The median survival was 3.8 years. Approximately 50% of patients were diagnosed with grade 3 tumors, which significantly increased the risk of recurrence or death (hazard ratio [HR] for grade 2 versus 1, 2.98; 95% CI, 1.26 to 7.02; HR grade 3 v 1, 2.56; 95% CI, 1.08 to 6.07; P = .04. No other variables were significantly associated with survival. Conclusion: Higher tumor grade was significantly associated with shorter survival, indicating impact of aggressive biology at diagnosis on higher risk of cancer spread and recurrence. Contrary to prevailing notions, telephone numbers were not reliable for follow-up. Collecting additional contact information will likely contribute to improvements in patient care and tracking. A region-wide population-based active registry is important to implement cancer control programs and improve survival in sub-Saharan Africa.

Changes in autopsy rates among cancer patients and their impact on cancer statistics from a public health point of view: a longitudinal study from 1980 to 2010 with data from Cancer Registry Zurich.

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Bieri, Uwe; Moch, Holger; Dehler, Silvia; Korol, Dimitri; Rohrmann, Sabine

2015-06-01

During the last decades, autopsy rates have dramatically decreased in many countries. The Cancer Registry Zurich, which exists since 1980, provides the opportunity to address to what extent the number of autopsies in cancer patients has changed over a longer period of time and how often autopsies provide a diagnosis of clinically undetected cancer. Data from the Cancer Registry Zurich consisting of 102,434 cancer cases among 89,933 deceased patients between 1980 and 2010 were analyzed by means of descriptive statistics. The autopsy rate declined from 60 % in 1980 to 7 % in 2010. The total number of autopsies performed decreased from 1179 in 1986 to 220 in 2010. Furthermore, there was also a decline in the rate of newly detected tumours based on autopsy information. In 1980, the rate of newly detected tumours through autopsy was 42 % compared with 2010, when the rate had declined to 17 %. A consequence of the reduced autopsy rate is the reduction of incidental findings at autopsy in cancer registration. However, this reduction has not negatively affected the total incidence of cancer. It seems that the state-of-the-art diagnostic tools used for tumour detection are sufficiently reliable, allowing the scientific community to trust the quality of data provided by cancer registries in spite of decreasing autopsy rates.

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

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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 Cancer 2017;123:219-227. © 2016 American Cancer Society. © 2016 American Cancer Society.

Validation of administrative hospital data for identifying incident pancreatic and periampullary cancer cases: a population-based study using linked cancer registry and administrative hospital data in New South Wales, Australia.

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Creighton, Nicola; Walton, Richard; Roder, David; Aranda, Sanchia; Currow, David

2016-07-01

Informing cancer service delivery with timely and accurate data is essential to cancer control activities and health system monitoring. This study aimed to assess the validity of ascertaining incident cases and resection use for pancreatic and periampullary cancers from linked administrative hospital data, compared with data from a cancer registry (the 'gold standard'). Analysis of linked statutory population-based cancer registry data and administrative hospital data for adults (aged ≥18 years) with a pancreatic or periampullary cancer case diagnosed during 2005-2009 or a hospital admission for these cancers between 2005 and 2013 in New South Wales, Australia. The sensitivity and positive predictive value (PPV) of pancreatic and periampullary cancer case ascertainment from hospital admission data were calculated for the 2005-2009 period through comparison with registry data. We examined the effect of the look-back period to distinguish incident cancer cases from prevalent cancer cases from hospital admission data using 2009 and 2013 as index years. Sensitivity of case ascertainment from the hospital data was 87.5% (4322/4939), with higher sensitivity when the cancer was resected (97.9%, 715/730) and for pancreatic cancers (88.6%, 3733/4211). Sensitivity was lower in regional (83.3%) and remote (85.7%) areas, particularly in areas with interstate outflow of patients for treatment, and for cases notified to the registry by death certificate only (9.6%). The PPV for the identification of incident cases was 82.0% (4322/5272). A 2-year look-back period distinguished the majority (98%) of incident cases from prevalent cases in linked hospital data. Pancreatic and periampullary cancer cases and resection use can be ascertained from linked hospital admission data with sufficient validity for informing aspects of health service delivery and system-level monitoring. Limited tumour clinical information and variation in case ascertainment across population subgroups are

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

Science.gov (United States)

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

OpenAIRE

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

2008-01-01

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 ...

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

Science.gov (United States)

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

Epidemiology of Breast Cancer among Bahraini Women; Data from the Bahrain Cancer Registry

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Randah R. Hamadeh

2014-05-01

Full Text Available Objectives: The aim of this study was to describe the epidemiology of breast cancer among the Bahraini female population in the years 2000‒2010 and examine its health policy implications. Methods: All breast cancer cases in the Bahrain Cancer Registry from 1st January 2000 to 31st December 2010 were included. Results: There were 1,005 cases, 12.7% of which were detected by screening. The overall mean age at diagnosis was 50.9 years (95% confidence interval 50.1–51.6. The age-standardised incidence rate declined from 58.2 per 100,000 in 2000 to 44.4 per 100,000 in 2010. The majority of cases were infiltrating ductal carcinoma (76.9%. Of the registered cases, 44.1% and 48.1% had an unknown grade and stage, respectively. The five-year survival rate was 63 ± 2%. Conclusion: The low percentage of cases detected by screening merits further evaluation of Bahrain’s screening programme. More effort should be made to reduce the proportion of unknown stage and grade breast cancers. Future research has to be directed towards understanding the reasons for Bahrain having the highest incidence rate of breast cancer in the Gulf Cooperation Council countries.

Breast Cancer Challenges and Screening in China: Lessons From Current Registry Data and Population Screening Studies.

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Song, Qing-Kun; Wang, Xiao-Li; Zhou, Xin-Na; Yang, Hua-Bing; Li, Yu-Chen; Wu, Jiang-Ping; Ren, Jun; Lyerly, Herbert Kim

2015-07-01

As one of its responses to the increasing global burden of breast cancer (BC), China has deployed a national registration and BC screening campaign. The present report describes these programs and the initial results of these national BC control strategies, highlighting the challenges to be considered. The primary BC incidence and prevalence data were obtained from the Chinese National Central Cancer Registry. MapInfo software was used to map the geographic distribution and variation. The time trends were estimated by the annual percentage of change from 2003 to 2009. The description of the screening plans and preliminary results were provided by the Ministry of Health. Chinese cancer registries were primarily developed and activated in the East and Coastal regions of China, with only 12.5% of the registries located in West China. Geographic variation was noted, with the incidence of BC higher in North China than in South China and in urban areas compared with rural areas. Of great interest, these registries reported that the overall BC incidence has been increasing in China, with an earlier age of onset compared with Western countries and a peak incidence rate at age 50. In response to this increasing incidence and early age of onset, BC screening programs assessed 1.46 million women aged 35-59 years, using clinical breast examinations and ultrasound as primary screening tools between 2009 and 2011. The diagnostic rate for this screening program was only 48.0/10(5) with 440 cases of early stage BC. Early stage BC was detected in nearly 70% of screened patients. Subsequently, a second-generation screening program was conducted that included older women aged 35-64 years and an additional 6 million women were screened. The cancer registration system in China has been uneven, with a greater focus on East rather than West China. The data from these registries demonstrate regional variation, an increasing BC incidence, and an early age of onset. The 2009 to 2011 BC

The Danish Neuro-Oncology Registry

DEFF Research Database (Denmark)

Hansen, Steinbjørn; Nielsen, Jan; Laursen, René J

2016-01-01

BACKGROUND: The Danish Neuro-Oncology Registry (DNOR) is a nationwide clinical cancer database that has prospectively registered data on patients with gliomas since January 2009. The purpose of this study was to describe the establishment of the DNOR and further to evaluate the database completen......BACKGROUND: The Danish Neuro-Oncology Registry (DNOR) is a nationwide clinical cancer database that has prospectively registered data on patients with gliomas since January 2009. The purpose of this study was to describe the establishment of the DNOR and further to evaluate the database...

Carcinogenicity of Mustard Gas: Report of the Cancer Registry Project Among Mustard Gas Exposed Iranian Veterans

International Nuclear Information System (INIS)

Soroush, M. R.

2007-01-01

Since 2003 The Janbazan Medical and Engineering Research Center in collaboration with Tehran University has conducted a nationwide cancer registry project among all Iranian Veterans with history of exposure to mustard gas during 1980-1988 Iran Iraq war. The mixed cohort study has a retrospective phase from the exposure time to 2003 and a prospective phase from 2003 to 2013. The main goal is to find any possible relationship between exposure to mustard gas and developing cancer as a long term health effect. A total number of 7500 individual (both military and civilians) with confirmed medical records of exposure to mustard gas have been included in the study to be compared with the same number of control population as well as the statistics of the national cancer registry system. The follow up of all cases is being done as a part of the national health monitoring program of the Janbazan (veterans) organization. In this report the latest findings of this project will be presented.(author)

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

Science.gov (United States)

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.

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

Science.gov (United States)

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.

Validity of Danish Breast Cancer Group (DBCG) registry data used in the predictors of breast cancer recurrence (ProBeCaRe) premenopausal breast cancer cohort study

DEFF Research Database (Denmark)

Cronin-Fenton, Deirdre P; Kjærsgaard, Anders; Ahern, Thomas P

2017-01-01

BACKGROUND: Validation studies of the Danish Breast Cancer Group (DBCG) registry show good agreement with medical records for adjuvant treatment data, but inconsistent recurrence information. No studies have validated changes in menopausal status or endocrine therapy during follow-up. In a longit...

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

Science.gov (United States)

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

Statistical aspects of tumor registries, Hiroshima and Nagasaki

Energy Technology Data Exchange (ETDEWEB)

Ishida, M

1961-02-24

Statistical considerations are presented on the tumor registries established for purpose of studying radiation induced carcinoma in Hiroshima and Nagasaki by observing tumors developing in the survivors of these cities. In addition to describing the background and purpose of the tumor registries the report consists of two parts: (1) accuracy of reported tumor cases and (2) statistical aspects of the incidence of tumors based both on a current population and on a fixed sample. Under the heading background, discussion includes the difficulties in attaining complete registration; the various problems associated with the tumor registries; and the special characteristics of tumor registries in Hiroshima and Nagasaki. Beye's a posteriori probability formula was applied to the Type I and Type II errors in the autopsy data of Hiroshima ABCC. (Type I, diagnosis of what is not cancer as cancer; Type II, diagnosis of what is cancer as noncancer.) Finally, the report discussed the difficulties in estimating a current population of survivors; the advantages and disadvantages of analyses based on a fixed sample and on an estimated current population; the comparison of incidence rates based on these populations using the 20 months' data of the tumor registry in Hiroshima; and the sample size required for studying radiation induced carcinoma. 10 references, 1 figure, 8 tables.

Implementing a Childhood Cancer Outcomes Surveillance System Within a Population-Based Cancer Registry

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Oscar Ramirez

2018-03-01

Full Text Available Purpose: Approximately 80% of cases of childhood cancer occur in low- and middle-income countries and are associated with high mortality rates. Assessing outcomes is essential for designing effective strategies to improve outcomes equally worldwide. We implemented a real-time surveillance system, VIGICANCER, embedded in a population-based cancer registry (PBCR to assess childhood cancer outcomes. Methods: VIGICANCER was established in 2009 as an integral part of Cali’s PBCR to collect real-time data on outcomes of patients (age < 19 years with a new diagnosis of cancer treated in pediatric oncology units in Cali, Colombia. Baseline and follow-up data (death, relapse, treatment abandonment, second neoplasms were collected from medical records, hospital discharge logs, pathology reports, death certificates, and the National Public Health Insurance database. A quality assurance process was implemented for the system. Results: From 2009 to 2013, data from 1,242 patients were included in VIGICANCER: 32% of patients were younger than 5 years, 55% were male, and 15% were Afro-descendants. International Classification of Childhood Cancer group I diagnoses predominated in all age groups except children younger than 1 year old, in whom CNS tumors predominated. Five-year overall survival for all cancers was 51.7% (95% CI, 47.9% to 55.4% for children (< 15 years, and 39.4% (95% CI, 29.8% to 50.5% for adolescents (15 to 18.9 years. Five-year overall survival for acute lymphoblastic leukemia was 55.6% (95% CI, 48.5% to 62.2%. Conclusion: Our study demonstrates the feasibility of implementing a real-time childhood cancer outcomes surveillance system embedded in a PBCR that can guide interventions to improve clinical outcomes in low- and middle-income countries.

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

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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.

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

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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.

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

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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

Risk of breast cancer following fertility treatment--a registry based cohort study of parous women in Norway.

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

2015-03-01

Despite increasing numbers of women availing themselves of assisted reproductive technology (ART), effects on cancer risk remain unresolved. Given hormonal exposures, breast cancer risk is of particular concern. The aim of this study is to investigate breast cancer risk amongst women giving birth following ART as compared to that amongst women who gave birth without ART. Data on all women who gave birth in Norway with or without ART, between 1984 and 2010 were obtained from the Medical Birth Registry of Norway (MBRN). 808,834 women eligible for study were linked to the Cancer Registry of Norway. Cox proportional models computed hazard ratios (HR) and 95% confidence intervals (CI) of breast cancer between the two groups, adjusting for age, parity, age at first birth, calendar period and region of residence. In total, 8,037 women were diagnosed with breast cancer during the study period, 138 ART women and 7,899 unexposed. Total follow-up time was 12,401,121 person-years (median 16.0); median age at entry was 32.5 years (range 18.6-49.9) for ART women and 26.3 (range 10.5-54.6) for unexposed. Women exposed to ART had an elevated risk of breast cancer (adjusted HR 1.20, 95% CI 1.01-1.42). Subgroup analyses gave an HR of 1.30 (95% CI 1.07-1.57) for women treated with IVF and 1.35 (95 % CI 1.07-1.71) for women with follow-up >10 years, compared with controls. Our findings of increased risk in the study population warrant continued monitoring of women treated with ART as this population advances into more typical cancer age ranges. © 2014 UICC.

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

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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.

Changing cancer survival in China during 2003-15: a pooled analysis of 17 population-based cancer registries.

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Zeng, Hongmei; Chen, Wanqing; Zheng, Rongshou; Zhang, Siwei; Ji, John S; Zou, Xiaonong; Xia, Changfa; Sun, Kexin; Yang, Zhixun; Li, He; Wang, Ning; Han, Renqiang; Liu, Shuzheng; Li, Huizhang; Mu, Huijuan; He, Yutong; Xu, Yanjun; Fu, Zhentao; Zhou, Yan; Jiang, Jie; Yang, Yanlei; Chen, Jianguo; Wei, Kuangrong; Fan, Dongmei; Wang, Jian; Fu, Fangxian; Zhao, Deli; Song, Guohui; Chen, Jianshun; Jiang, Chunxiao; Zhou, Xin; Gu, Xiaoping; Jin, Feng; Li, Qilong; Li, Yanhua; Wu, Tonghao; Yan, Chunhua; Dong, Jianmei; Hua, Zhaolai; Baade, Peter; Bray, Freddie; Jemal, Ahmedin; Yu, Xue Qin; He, Jie

2018-05-01

From 2003 to 2005, standardised 5-year cancer survival in China was much lower than in developed countries and varied substantially by geographical area. Monitoring population-level cancer survival is crucial to the understanding of the overall effectiveness of cancer care. We therefore aimed to investigate survival statistics for people with cancer in China between 2003 and 2015. We used population-based data from 17 cancer registries in China. Data for the study population was submitted by the end of July 31, 2016, with follow-up data on vital status obtained on Dec 31, 2015. We used anonymised, individual cancer registration records of patients (aged 0-99 years) diagnosed with primary, invasive cancers from 2003 to 2013. Patients eligible for inclusion had data for demographic characteristics, date of diagnosis, anatomical site, morphology, behaviour code, vital status, and last date of contact. We analysed 5-year relative survival by sex, age, and geographical area, for all cancers combined and 26 different cancer types, between 2003 and 2015. We stratified survival estimates by calendar period (2003-05, 2006-08, 2009-11, and 2012-15). There were 678 842 records of patients with invasive cancer who were diagnosed between 2003 and 2013. Of these records, 659 732 (97·2%) were eligible for inclusion in the final analyses. From 2003-05 to 2012-15, age-standardised 5-year relative survival increased substantially for all cancers combined, for both male and female patients, from 30·9% (95% CI 30·6-31·2) to 40·5% (40·3-40·7). Age-standardised 5-year relative survival also increased for most cancer types, including cancers of the uterus (average change per calendar period 5·5% [95% CI 2·5-8·5]), thyroid (5·4% [3·2-7·6]), cervix (4·5% [2·9-6·2]), and bone (3·2% [2·1-4·4]). In 2012-15, age-standardised 5-year survival for all patients with cancer was higher in urban areas (46·7%, 95% CI 46·5-47·0) than in rural areas (33·6%, 33·3-33·9

Use of general practice, diagnostic investigations and hospital services before and after cancer diagnosis - a population-based nationwide registry study of 127,000 incident adult cancer patients

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Christensen Karina

2012-07-01

Full Text Available Abstract Background Knowledge of patterns in cancer patients’ health care utilisation around the time of diagnosis may guide health care resource allocation and provide important insights into this groups’ demand for health care services. The health care need of patients with comorbid conditions far exceeds the oncology capacity and it is therefore important to elucidate the role of both primary and secondary care. The aim of this paper is to describe the use of health care services amongst incident cancer patients in Denmark one year before and one year after cancer diagnosis. Methods The present study is a national population-based case–control (1:10 registry study. All incident cancer patients (n = 127,210 diagnosed between 2001 and 2006 aged 40 years or older were identified in the Danish Cancer Registry. Data from national health registries were provided for all cancer patients and for 1,272,100 controls. Monthly consultation frequencies, monthly proportions of persons receiving health services and three-month incidence rate ratios for one year before and one year after the cancer diagnosis were calculated. Data were analysed separately for women and men. Results Three months before their diagnosis, cancer patients had twice as many general practitioner (GP consultations, ten to eleven times more diagnostic investigations and five times more hospital contacts than the reference population. The demand for GP services peaked one month before diagnosis, the demand for diagnostic investigations one month after diagnosis and the number of hospital contacts three months after diagnosis. The proportion of cancer patients receiving each of these three types of health services remained more than 10% above that of the reference population from two months before diagnosis until the end of the study period. Conclusions Cancer patients’ health service utilisation rose dramatically three months before their diagnosis. This increase applied to

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

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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 sample was over-represented by men and those with prostate or other cancer types (p's sample also exhibited lower quality of life and social support and greater mood disturbance (p's convenience and systematic samples differ has important implications for external validity and potential for dissemination of Internet-based interventions.

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

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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.

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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

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

Directory of Open Access Journals (Sweden)

Chantal Babb

2014-01-01

Full Text Available 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.

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

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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

Changing cancer survival in China during 2003–15: a pooled analysis of 17 population-based cancer registries

Directory of Open Access Journals (Sweden)

Hongmei Zeng, PhD

2018-05-01

Full Text Available Summary: Background: From 2003 to 2005, standardised 5-year cancer survival in China was much lower than in developed countries and varied substantially by geographical area. Monitoring population-level cancer survival is crucial to the understanding of the overall effectiveness of cancer care. We therefore aimed to investigate survival statistics for people with cancer in China between 2003 and 2015. Methods: We used population-based data from 17 cancer registries in China. Data for the study population was submitted by the end of July 31, 2016, with follow-up data on vital status obtained on Dec 31, 2015. We used anonymised, individual cancer registration records of patients (aged 0–99 years diagnosed with primary, invasive cancers from 2003 to 2013. Patients eligible for inclusion had data for demographic characteristics, date of diagnosis, anatomical site, morphology, behaviour code, vital status, and last date of contact. We analysed 5-year relative survival by sex, age, and geographical area, for all cancers combined and 26 different cancer types, between 2003 and 2015. We stratified survival estimates by calendar period (2003–05, 2006–08, 2009–11, and 2012–15. Findings: There were 678 842 records of patients with invasive cancer who were diagnosed between 2003 and 2013. Of these records, 659 732 (97·2% were eligible for inclusion in the final analyses. From 2003–05 to 2012–15, age-standardised 5-year relative survival increased substantially for all cancers combined, for both male and female patients, from 30·9% (95% CI 30·6–31·2 to 40·5% (40·3–40·7. Age-standardised 5-year relative survival also increased for most cancer types, including cancers of the uterus (average change per calendar period 5·5% [95% CI 2·5–8·5], thyroid (5·4% [3·2–7·6], cervix (4·5% [2·9–6·2], and bone (3·2% [2·1–4·4]. In 2012–15, age-standardised 5-year survival for all patients with cancer was higher in urban

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

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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.

Contributions of cytology examination and methods in lung cancer diagnostic

International Nuclear Information System (INIS)

Jerse, M.; Tercelj, M.

2006-01-01

Background. Lung cancer (LC) is still the leading cause of cancer death according to published data worldwide and confirmed also by the data obtained from the central Cancer Registry of Slovenia. Early detection of LC has an important impact on the long-term survival rate of the patients. In spite of a great advance in imaging technology for a better visualization and early detection of the neoplasms and a variety of screening tests, only cytopathology examination finally define the neoplastic lesion. Methods. To evaluate the contribution of cytology examination in the diagnosis of LC we studied the cytology diagnoses, comparing them with histology reports in patients, who underwent the diagnostic procedure under suspicion of the LC during last 2 years. Results. Of a total 772 patients, in 241 patients cancer was microscopically confirmed. The most frequent diagnoses were adenocarcinoma (36.9%), squamous cell carcinoma (26.6%), and small cell carcinoma (SCLC) (12.9%). There were 22% of neoplasms classified as non-small cell carcinomas (NSCLC). From the clinician point of view considering the therapy it is very important to distinguish NSCLC from SCLC. And in our study the cytology-histology correlation between these two major types of carcinoma was almost 100%. Based only on cytology, 68 (28.2%) patients received microscopic diagnosis of malignoma, and the specimens for this group of patients were obtained mostly from transbronchial or transthoracic fine needle aspiration biopsies. Conclusions. Cytology is of great diagnostic value, a reliable and relatively non-invasive method for patients. Cytology specimens should be taken in cases where it is not possible to obtain samples for histology. (author)

Analysis of stage and clinical/prognostic factors for colon and rectal cancer from SEER registries: AJCC and collaborative stage data collection system.

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Chen, Vivien W; Hsieh, Mei-Chin; Charlton, Mary E; Ruiz, Bernardo A; Karlitz, Jordan; Altekruse, Sean F; Ries, Lynn A G; Jessup, J Milburn

2014-12-01

The Collaborative Stage (CS) Data Collection System enables multiple cancer registration programs to document anatomic and molecular pathology features that contribute to the Tumor (T), Node (N), Metastasis (M) - TNM - system of the American Joint Committee on Cancer (AJCC). This article highlights changes in CS for colon and rectal carcinomas as TNM moved from the AJCC 6th to the 7th editions. Data from 18 Surveillance, Epidemiology, and End Results (SEER) population-based registries were analyzed for the years 2004-2010, which included 191,361colon and 73,341 rectal carcinomas. Overall, the incidence of colon and rectal cancers declined, with the greatest decrease in stage 0. The AJCC's 7th edition introduction of changes in the subcategorization of T4, N1, and N2 caused shifting within stage groups in 25,577 colon and 10,150 rectal cancers diagnosed in 2010. Several site-specific factors (SSFs) introduced in the 7th edition had interesting findings: 1) approximately 10% of colon and rectal cancers had tumor deposits - about 30%-40% occurred without lymph node metastases, which resulted in 2.5% of colon and 3.3% of rectal cases becoming N1c (stage III A/B) in the AJCC 7th edition; 2) 10% of colon and 12% of rectal cases had circumferential radial margins Cancer Society.

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

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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.

Comorbidity and cervical cancer survival of Indigenous and non-Indigenous Australian women: A semi-national registry-based cohort study (2003-2012).

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Diaz, Abbey; Baade, Peter D; Valery, Patricia C; Whop, Lisa J; Moore, Suzanne P; Cunningham, Joan; Garvey, Gail; Brotherton, Julia M L; O'Connell, Dianne L; Canfell, Karen; Sarfati, Diana; Roder, David; Buckley, Elizabeth; Condon, John R

2018-01-01

Little is known about the impact of comorbidity on cervical cancer survival in Australian women, including whether Indigenous women's higher prevalence of comorbidity contributes to their lower survival compared to non-Indigenous women. Data for cervical cancers diagnosed in 2003-2012 were extracted from six Australian state-based cancer registries and linked to hospital inpatient records to identify comorbidity diagnoses. Five-year cause-specific and all-cause survival probabilities were estimated using the Kaplan-Meier method. Flexible parametric models were used to estimate excess cause-specific mortality by Charlson comorbidity index score (0,1,2+), for Indigenous women compared to non-Indigenous women. Of 4,467 women, Indigenous women (4.4%) compared to non-Indigenous women had more comorbidity at diagnosis (score ≥1: 24.2% vs. 10.0%) and lower five-year cause-specific survival (60.2% vs. 76.6%). Comorbidity was associated with increased cervical cancer mortality for non-Indigenous women, but there was no evidence of such a relationship for Indigenous women. There was an 18% reduction in the Indigenous: non-Indigenous hazard ratio (excess mortality) when comorbidity was included in the model, yet this reduction was not statistically significant. The excess mortality for Indigenous women was only evident among those without comorbidity (Indigenous: non-Indigenous HR 2.5, 95%CI 1.9-3.4), indicating that factors other than those measured in this study are contributing to the differential. In a subgroup of New South Wales women, comorbidity was associated with advanced-stage cancer, which in turn was associated with elevated cervical cancer mortality. Survival was lowest for women with comorbidity. However, there wasn't a clear comorbidity-survival gradient for Indigenous women. Further investigation of potential drivers of the cervical cancer survival differentials is warranted. The results highlight the need for cancer care guidelines and multidisciplinary

Comorbidity and cervical cancer survival of Indigenous and non-Indigenous Australian women: A semi-national registry-based cohort study (2003-2012.

Directory of Open Access Journals (Sweden)

Abbey Diaz

Full Text Available Little is known about the impact of comorbidity on cervical cancer survival in Australian women, including whether Indigenous women's higher prevalence of comorbidity contributes to their lower survival compared to non-Indigenous women.Data for cervical cancers diagnosed in 2003-2012 were extracted from six Australian state-based cancer registries and linked to hospital inpatient records to identify comorbidity diagnoses. Five-year cause-specific and all-cause survival probabilities were estimated using the Kaplan-Meier method. Flexible parametric models were used to estimate excess cause-specific mortality by Charlson comorbidity index score (0,1,2+, for Indigenous women compared to non-Indigenous women.Of 4,467 women, Indigenous women (4.4% compared to non-Indigenous women had more comorbidity at diagnosis (score ≥1: 24.2% vs. 10.0% and lower five-year cause-specific survival (60.2% vs. 76.6%. Comorbidity was associated with increased cervical cancer mortality for non-Indigenous women, but there was no evidence of such a relationship for Indigenous women. There was an 18% reduction in the Indigenous: non-Indigenous hazard ratio (excess mortality when comorbidity was included in the model, yet this reduction was not statistically significant. The excess mortality for Indigenous women was only evident among those without comorbidity (Indigenous: non-Indigenous HR 2.5, 95%CI 1.9-3.4, indicating that factors other than those measured in this study are contributing to the differential. In a subgroup of New South Wales women, comorbidity was associated with advanced-stage cancer, which in turn was associated with elevated cervical cancer mortality.Survival was lowest for women with comorbidity. However, there wasn't a clear comorbidity-survival gradient for Indigenous women. Further investigation of potential drivers of the cervical cancer survival differentials is warranted.The results highlight the need for cancer care guidelines and

Targeted sequencing of established and candidate colorectal cancer genes in the Colon Cancer Family Registry Cohort.

Science.gov (United States)

Raskin, Leon; Guo, Yan; Du, Liping; Clendenning, Mark; Rosty, Christophe; Lindor, Noralane M; Gruber, Stephen B; Buchanan, Daniel D

2017-11-07

The underlying genetic cause of colorectal cancer (CRC) can be identified for 5-10% of all cases, while at least 20% of CRC cases are thought to be due to inherited genetic factors. Screening for highly penetrant mutations in genes associated with Mendelian cancer syndromes using next-generation sequencing (NGS) can be prohibitively expensive for studies requiring large samples sizes. The aim of the study was to identify rare single nucleotide variants and small indels in 40 established or candidate CRC susceptibility genes in 1,046 familial CRC cases (including both MSS and MSI-H tumor subtypes) and 1,006 unrelated controls from the Colon Cancer Family Registry Cohort using a robust and cost-effective DNA pooling NGS strategy. We identified 264 variants in 38 genes that were observed only in cases, comprising either very rare (minor allele frequency cancer susceptibility genes BAP1, CDH1, CHEK2, ENG, and MSH3 . For the candidate CRC genes, we identified likely pathogenic variants in the helicase domain of POLQ and in the LRIG1 , SH2B3 , and NOS1 genes and present their clinicopathological characteristics. Using a DNA pooling NGS strategy, we identified novel germline mutations in established CRC susceptibility genes in familial CRC cases. Further studies are required to support the role of POLQ , LRIG1 , SH2B3 and NOS1 as CRC susceptibility genes.

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

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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.

Regorafenib in the Real-Life Clinical Practice: Data from the Czech Registry.

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Kopeckova, Katerina; Buchler, Tomas; Bortlicek, Zbynek; Hejduk, Karel; Chloupkova, Renata; Melichar, Bohuslav; Pokorna, Petra; Tomasek, Jiri; Linke, Zdenek; Petruzelka, Lubos; Kiss, Igor; Prausova, Jana

2017-02-01

To describe the use of regorafenib for the treatment of metastatic colorectal cancer (mCRC) in clinical practice in the Czech Republic, and to describe the clinical outcomes of patients in terms of safety and survival. The data of patients treated with regorafenib were extracted from the national CORECT registry. The CORECT registry is a non-interventional post-marketing database, gathering information about patients with CRC and treated with targeted agents. Twenty oncology centres in the Czech Republic contributed to this registry. Collected data included patients' characteristics, disease history, cancer treatments, response to treatments and safety. A total of 148 patients treated with regorafenib in clinical practice were analysed. At regorafenib initiation, almost all patients were fully active or slightly restricted in physical activity. Regorafenib was not administered as first-line treatment in any patient. Median progression-free survival was 3.5 months and median overall survival was 9.3 months. One-year survival rate was 44.6 %. Four partial responses were observed and 51 stable diseases. Progression was observed in 66 patients (44.6 %). The main reported adverse events were skin toxicity (5.4 %) and fatigue (2.0 %). Regorafenib is a well-established treatment for pretreated patients with mCRC, however real-life data are scarce. Our results demonstrated slightly better efficacy of regorafenib and better safety profile in patients with mCRC compared to the randomised trials.

Ethical aspects of registry-based research in the Nordic countries

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Ludvigsson JF

2015-11-01

Full Text Available Jonas F Ludvigsson,1,2 Siri E Håberg,3 Gun Peggy Knudsen,3 Pierre Lafolie,4,5 Helga Zoega,6 Catharina Sarkkola,7 Stephanie von Kraemer,7 Elisabete Weiderpass,1,7–10 Mette Nørgaard11 1Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, 2Department of Pediatrics, Örebro University Hospital, Örebro, Sweden; 3Norwegian Institute of Public Health, Oslo, Norway; 4Department of Medicine, Clinical Pharmacology Unit, 5The Stockholm Regional Ethical Review Board, Karolinska Institutet, Stockholm, Sweden; 6Center of Public Health Sciences, Faculty of Medicine, University of Iceland, Reykjavík, Iceland; 7Genetic Epidemiology Group, Folkhälsan Research Center, Helsinki, Finland; 8Department of Community Medicine, Faculty of Health Sciences, University of Tromsø, 9The Arctic University of Norway, Tromsø, 10Department of Research, Cancer Registry of Norway, Oslo, Norway; 11Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark Abstract: National health care registries in the Nordic countries share many attributes, but different legal and ethical frameworks represent a challenge to promoting effective joint research. Internationally, there is a lack of knowledge about how ethical matters are considered in Nordic registry-based research, and a lack of knowledge about how Nordic ethics committees operate and what is needed to obtain an approval. In this paper, we review ethical aspects of registry-based research, the legal framework, the role of ethics review boards in the Nordic countries, and the structure of the ethics application. We discuss the role of informed consent in registry-based research and how to safeguard the integrity of study participants, including vulnerable subjects and children. Our review also provides information on the different government agencies that contribute registry-based data, and a list of the major health registries in Denmark, Finland, Iceland, Norway, and

Living with the physical and mental consequences of an ostomy : A study among 1–10-year rectal cancer survivors from the population-based PROFILES registry

NARCIS (Netherlands)

Mols, F.; Lemmens, V.E.P.P.; Bosscha, K.J.; Broek van den, W.; Thong, M.S.Y.

2014-01-01

Background This study examined the physical and mental consequences of an ostomy among 1–10-year rectal cancer survivors. Methods Patients with rectal cancer diagnosed from 2000 to 2009, as registered in the population-based Eindhoven Cancer Registry, received a questionnaire on quality of life

Worry Is Good for Breast Cancer Screening: A Study of Female Relatives from the Ontario Site of the Breast Cancer Family Registry

International Nuclear Information System (INIS)

Zhang, L.; Knight, J. A.; Andrulis, I. L.; Chiarelli, A. M.; Glendon, G.; Ritvo, P.

2012-01-01

Few prospective studies have examined associations between breast cancer worry and screening behaviours in women with elevated breast cancer risks based on family history. Methods. This study included 901 high familial risk women, aged 23-71 years, from the Ontario site of the Breast Cancer Family Registry. Self-reported breast screening behaviours at year-one followup were compared between women at low (N=305), medium ( N=433), and high (N=163) levels of baseline breast cancer worry using logistic regression. Nonlinear relationships were assessed using likelihood ratio tests. Results. A significant non-linear inverted “U” relationship was observed between breast cancer worry and mammography screening (π=0. 034) for all women, where women at either low or high worry levels were less likely than those at medium to have a screening mammogram. A similar significant non-linear inverted “U” relationship was also found among all women and women at low familial risk for worry and screening clinical breast examinations (CBEs). Conclusions. Medium levels of cancer worries predicted higher rates of screening mammography and CBE among high-risk women

Revisiting the Surveillance Epidemiology and End Results Cancer Registry and Medicare Health Outcomes Survey (SEER-MHOS) Linked Data Resource for Patient-Reported Outcomes Research in Older Adults with Cancer.

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Kent, Erin E; Malinoff, Rochelle; Rozjabek, Heather M; Ambs, Anita; Clauser, Steven B; Topor, Marie A; Yuan, Gigi; Burroughs, James; Rodgers, Anne B; DeMichele, Kimberly

2016-01-01

Researchers and clinicians are increasingly recognizing the value of patient-reported outcome (PRO) data to better characterize people's health and experiences with illness and care. Considering the rising prevalence of cancer in adults aged 65 and older, PRO data are particularly relevant for older adults with cancer, who often require complex cancer care and have additional comorbid conditions. A data linkage between the Surveillance Epidemiology and End Results (SEER) cancer registry and the Medicare Health Outcomes Survey (MHOS) was created through a partnership between the National Cancer Institute and the Centers for Medicare and Medicaid Services that created the opportunity to examine PROs in Medicare Advantage enrollees with and without cancer. The December 2013 linkage of SEER-MHOS data included the linked data for 12 cohorts, bringing the number of individuals in the linked data set to 95,723 with cancer and 1,510,127 without. This article reviews the features of the resource and provides information on some descriptive characteristics of the individuals in the data set (health-related quality of life, body mass index, fall risk management, number of unhealthy days in the past month). Individuals without (n=258,108) and with (n=3,440) cancer (1,311 men with prostate cancer, 982 women with breast cancer, 689 with colorectal cancer, 458 with lung cancer) were included in the current descriptive analysis. Given increasing longevity, advances in effective therapies and earlier detection, and population growth, the number of individuals aged 65 and older with cancer is expected to reach more than 12 million by 2020. SEER-MHOS provides population-level, self-reported, cancer registry-linked data for person-centered surveillance research on this growing population. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

Patterns of care and outcomes for stage IIIB non-small cell lung cancer in the TNM-7 era: Results from the Netherlands Cancer Registry.

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Dickhoff, C; Dahele, M; Smit, E F; Paul, M A; Senan, S; Hartemink, K J; Damhuis, R A

2017-08-01

There is limited data on the pattern of care for locally advanced, clinical (c) IIIB non-small cell lung cancer (NSCLC) in the TNM-7 staging era. The primary aim of this study was to investigate national patterns of care and outcomes in the Netherlands, with a secondary focus on the use of surgery. Data from patients treated for TNM-7 cIIIB NSCLC between 2010 and 2014, was extracted from the Netherlands Cancer Registry (NCR). Survival data was obtained from the automated Civil Registry. 43.762 patients with NSCLC were recorded in the NCR during this 5-year period, with cIIIB accounting for 10% (n=4.401). Clinical N2 (37%) and N3 (63%) nodal involvement was pathologically confirmed in 50.8%. The use of endobronchial ultrasound (EBUS) increased with time from 9% to 29% (pNetherlands, CRT is the most frequent treatment for cIIIB NSCLC in the TNM-7 era. The use of surgery is limited. Accurate staging requires specific attention and the scarce use of radical treatment in elderly patients merits further evaluation. Copyright © 2017 Elsevier B.V. All rights reserved.

The Danish National Acute Leukemia Registry

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Østgård, Lene Sofie Granfeldt; Nørgaard, Jan Maxwell; Raaschou-Jensen, Klas Kræsten

2016-01-01

AIM OF DATABASE: The main aim of the Danish National Acute Leukemia Registry (DNLR) was to obtain information about the epidemiology of the hematologic cancers acute myeloid leukemia (AML), acute lymphoblastic leukemia (ALL), and myelodysplastic syndrome (MDS). STUDY POPULATION: The registry...... was established in January 2000 by the Danish Acute Leukemia Group and has been expanded over the years. It includes adult AML patients diagnosed in Denmark since 2000, ALL patients diagnosed since 2005, and MDS patients diagnosed since 2010. The coverage of leukemia patients exceeds 99%, and the coverage of MDS...... years. To ensure this high coverage, completeness, and quality of data, linkage to the Danish Civil Registration System and the Danish National Registry of Patients, and several programmed data entry checks are used. CONCLUSION: The completeness and positive predictive values of the leukemia data have...

The utility of linked cancer registry and health administration data for describing system-wide outcomes and research: a BreastScreen example.

Science.gov (United States)

Buckley, Elizabeth S; Sullivan, Tom; Farshid, Gelareh; Hiller, Janet E; Roder, David M

2016-10-01

Stratification of women with screen-detected ductal carcinoma in situ (DCIS) by risk of subsequent invasive breast cancer (IBC) could assist treatment planning and selection of surveillance protocols that accord with risk. We assessed the utility of routinely collected administrative data for stratifying by IBC risk following DCIS detection in a population-based screening programme to inform ongoing surveillance protocols. A retrospective cohort design was used, employing linked data from the South Australian breast screening programme and cancer registry. Women entered the study at screening commencement and were followed until IBC diagnosis, death or end of the study period (1 December 2010), whichever came first. Routinely collected administrative data were analyzed to identify predictors of invasive breast cancer. Proportional hazards regression confirmed that the DCIS cohort had an elevated risk of IBC after adjustment for relevant confounders (HR = 4.0 (95% CL 3.4, 4.8)), which accorded with previous study results. Within the DCIS cohort, conservative breast surgery and earlier year of screening commencement were both predictive of an elevated invasive breast cancer risk. These linked cancer registry and administrative data gave plausible estimates of IBC risk following DCIS diagnosis, but were limited in coverage of key items for further risk stratification. It is important that the research utility of administrative datasets is maximized in their design phase in collaboration with researchers. © 2016 John Wiley & Sons, Ltd.

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

Science.gov (United States)

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.

Breast cancer screening-opportunistic use of registry and linked screening data for local evaluation.

Science.gov (United States)

Roder, David; Farshid, Gelareh; Gill, Grantley; Kollias, Jim; Koczwara, Bogda; Karapetis, Chris; Adams, Jacqui; Joshi, Rohit; Keefe, Dorothy; Powell, Kate; Fusco, Kellie; Eckert, Marion; Buckley, Elizabeth; Beckmann, Kerri

2017-06-01

Screening has been found to reduce breast cancer mortality at a population level in Australia, but these studies did not address local settings where numbers of deaths would generally have been too low for evaluation. Clinicians, administrators, and consumer groups are also interested in local service outcomes. We therefore use more common prognostic and treatment measures and survivals to gain evidence of screening effects among patients attending 4 local hospitals for treatment. To compare prognostic, treatment, and survival measures by screening history to determine whether expected screening effects are occurring. Employing routine clinical registry and linked screening data to investigate associations of screening history with these measures, using unadjusted and adjusted analyses. Screened women had a 10-year survival from breast cancer of 92%, compared with 78% for unscreened women; and 79% of screened surgical cases had breast conserving surgery compared with 64% in unscreened women. Unadjusted analyses indicated that recently screened cases had earlier tumor node metastasis stages, smaller diameters, less nodal involvement, better tumor differentiation, more oestrogen and progesterone receptor positive lesions, more hormone therapy, and less chemotherapy. Radiotherapy tended to be more common in screening participants. More frequent use of adjunctive radiotherapy applied when breast conserving surgery was used. Results confirm the screening effects expected from the scientific literature and demonstrate the value of opportunistic use of available registry and linked screening data for indicating to local health administrations, practitioners, and consumers whether local screening services are having the effects expected. © 2016 John Wiley & Sons, Ltd.

Danish Prostate Cancer Registry

DEFF Research Database (Denmark)

Helgstrand, J Thomas; Klemann, Nina; Røder, Martin Andreas

2016-01-01

of SNOMED codes were identified. A computer algorithm was developed to transcode SNOMED codes into an analyzable format including procedure (eg, biopsy, transurethral resection, etc), diagnosis, and date of diagnosis. For validation, ~55,000 pathological reports were manually reviewed. Prostate-specific...... antigen, vital status, causes of death, and tumor-node-metastasis classification were integrated from national registries. RESULTS: Of the 161,525 specimens from 113,801 males identified, 83,379 (51.6%) were sets of prostate biopsies, 56,118 (34.7%) were transurethral/transvesical resections......BACKGROUND: Systematized Nomenclature of Medicine (SNOMED) codes are computer-processable medical terms used to describe histopathological evaluations. SNOMED codes are not readily usable for analysis. We invented an algorithm that converts prostate SNOMED codes into an analyzable format. We...

Meat intake, cooking methods, dietary carcinogens, and colorectal cancer risk: findings from the Colorectal Cancer Family Registry.

Science.gov (United States)

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) carcinogens relevant for CRC risk. © 2015 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.

Incidence rate of ovarian cancer cases in Saudi Arabia: an observational descriptive epidemiological analysis of data from Saudi Cancer Registry 2001–2008

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Alghamdi IG

2014-06-01

Full Text Available Ibrahim G Alghamdi,1,2 Issam I Hussain,1 Mohamed S Alghamdi,3 Mansour M Alghamdi,4 Ahlam A Dohal,4 Mohammed A El-Sheemy51School of Life Sciences, University of Lincoln, Brayford Pool, Lincoln, UK; 2Al-Baha University, Kingdom of Saudia Arabia; 3Ministry of Health, General Directorate of Health Affairs, Al-Baha, Kingdom of Saudi Arabia; 4King Fahad Specialist Hospital–Dammam, Kingdom of Saudi Arabia; 5Department of Research and Development, Lincoln Hospital, United Lincolnshire Hospitals, National Health Service Trust, Lincoln, UKPurpose: This study provides descriptive epidemiological data, such as the percentage of cases diagnosed, crude incidence rate (CIR, and age-standardized incidence rate (ASIR of ovarian cancer in Saudi Arabia from 2001–2008. Patients and methods: A retrospective descriptive epidemiological analysis of all ovarian cancer cases recorded in the Saudi Cancer Registry (SCR from January 2001–December 2008 was performed. The data were analyzed using descriptive statistics, analysis of variance tests, Poisson regression, and simple linear modeling.Results: A total of 991 ovarian cancer cases were recorded in the SCR from January 2001–December 2008. The region of Riyadh had the highest overall ASIR at 3.3 cases per 100,000 women, followed by the Jouf and Asir regions at 3.13 and 2.96 cases per 100,000 women. However, Hail and Jazan had the lowest rates at 1.4 and 0.6 cases per 100,000 women, respectively. Compared to Jazan, the incidence rate ratio for the number of ovarian cancer cases was significantly higher (P<0.001 in the Makkah region at 6.4 (95% confidence interval [CI]: 4.13–9.83, followed by Riyadh at 6.3 (95% CI: 4.10–9.82, and the eastern region of Saudi Arabia at 4.52 (95% CI: 2.93–6.98. The predicted annual CIR and ASIR for ovarian cancer in Saudi Arabia could be defined by the equations 0.9 + (0.07× years and 1.71 + (0.09× years, respectively.Conclusion: We observed a slight increase in the CIRs and

Appraising the quality of sub-Saharan African cancer registration systems that contributed to GLOBOCAN 2008: a review of the literature and critical appraisal.

Science.gov (United States)

Crocker-Buque, Tim; Pollock, Allyson M

2015-02-01

To critically appraise the quality of sub-Saharan African cancer registration systems that submitted data to GLOBOCAN 2008 with respect to population coverage using publicly available information and to show the use of GLOBOCAN statistics in determining global health priorities. Sources of cancer registration data for twenty-six sub-Saharan African cancer registries were identified from GLOBOCAN 2008 factsheets. Additional information was extracted from International Agency for Research on Cancer publications. A literature search was conducted to identify studies that reported additional information on data collection methods and provided 27 studies. The websites of the 10 largest funders of development assistance for health were searched for GLOBOCAN citations. Twenty-six sub-Saharan African cancer registration systems submitting data to GLOBOCAN 2008 in relation to 21 countries. Information on 15 quality variables were extracted and compared with the international gold standard for cancer registration systems. Population coverage of the cancer registries ranged from from 2.3% of the population in Kenya to 100% in The Gambia, with a heavy urban bias in all countries. However, 20 countries (300 million people) had no cancer registration systems. Nineteen of the 26 registries failed to meet more than five of the 15 quality criteria and only one country met more than 10. Seven of the 10 largest funders of development assistance for health cite GLOBOCAN statistics in support of policy priorities. GLOBOCAN 2008 estimates are based on data drawn from poor quality cancer registration systems, with limited or no population registry coverage. It is essential the GLOBOCAN 2012 estimates should provide information on the quality of the data collection and explain the limitations of the estimates. Development organisations and the World Health Organization need to take a more cautious approach when using these data to determine priorities and allocating resources. © The

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.

Science.gov (United States)

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/

Do pregnancy characteristics contribute to rising childhood cancer incidence rates in the United States?

Science.gov (United States)

Kehm, Rebecca D; Osypuk, Theresa L; Poynter, Jenny N; Vock, David M; Spector, Logan G

2018-03-01

Since 1975, childhood cancer incidence rates have gradually increased in the United States; however, few studies have conducted analyses across time to unpack this temporal rise. The aim of this study was to test the hypothesis that increasing cancer incidence rates are due to secular trends in pregnancy characteristics that are established risk factors for childhood cancer incidence including older maternal age, higher birthweight, and lower birth order. We also considered temporal trends in sociodemographic characteristics including race/ethnicity and poverty. We conducted a time series county-level ecologic analysis using linked population-based data from Surveillance, Epidemiology, and End Results cancer registries (1975-2013), birth data from the National Center for Health Statistics (1970-2013), and sociodemographic data from the US Census (1970-2010). We estimated unadjusted and adjusted average annual percent changes (AAPCs) in incidence of combined (all diagnoses) and individual types of cancer among children, ages 0-4 years, from Poisson mixed models. There was a statistically significant unadjusted temporal rise in incidence of combined childhood cancers (AAPC = 0.71%; 95% CI = 0.55-0.86), acute lymphoblastic leukemia (0.78%; 0.49-1.07), acute myeloid leukemia (1.86%; 1.13-2.59), central nervous system tumors (1.31%; 0.94-1.67), and hepatoblastoma (2.70%; 1.68-3.72). Adjustment for county-level maternal age reduced estimated AAPCs between 8% (hepatoblastoma) and 55% (combined). However, adjustment for other county characteristics did not attenuate AAPCs, and AAPCs remained significantly above 0% in models fully adjusted for county-level characteristics. Although rising maternal age may account for some of the increase in childhood cancer incidence over time, other factors, not considered in this analysis, may also contribute to temporal trends. © 2017 Wiley Periodicals, Inc.

Swedish National Registry of Urinary Bladder Cancer: No difference in relative survival over time despite more aggressive treatment.

Science.gov (United States)

Jahnson, Staffan; Hosseini Aliabad, Abolfazl; Holmäng, Sten; Jancke, Georg; Liedberg, Fredrik; Ljungberg, Börje; Malmström, Per-Uno; Rosell, Johan

2016-01-01

The aim of this study was to use the Swedish National Registry of Urinary Bladder Cancer (SNRUBC) to investigate changes in patient and tumour characteristics, management and survival in bladder cancer cases over a period of 15 years. All patients with newly detected bladder cancer reported to the SNRUBC during 1997-2011 were included in the study. The cohort was divided into three groups, each representing 5 years of the 15 year study period. The study included 31,266 patients (74% men, 26% women) with a mean age of 72 years. Mean age was 71.7 years in the first subperiod (1997-2001) and 72.5 years in the last subperiod (2007-2011). Clinical T categorization changed from the first to the last subperiod: Ta from 45% to 48%, T1 from 21.6% to 22.4%, and T2-T4 from 27% to 25%. Also from the first to the last subperiod, intravesical treatment after transurethral resection for T1G2 and T1G3 tumours increased from 15% to 40% and from 30% to 50%, respectively, and cystectomy for T2-T4 tumours increased from 30% to 40%. No differences between the analysed subperiods were found regarding relative survival in patients with T1 or T2-T4 tumours, or in the whole cohort. This investigation based on a national bladder cancer registry showed that the age of the patients at diagnosis increased, and the proportion of muscle-invasive tumours decreased. The treatment of all tumour stages became more aggressive but relative survival showed no statistically significant change over time.

Sirolimus use and cancer incidence among US kidney transplant recipients.

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Yanik, E L; Gustafson, S K; Kasiske, B L; Israni, A K; Snyder, J J; Hess, G P; Engels, E A; Segev, D L

2015-01-01

Sirolimus has anti-carcinogenic properties and can be included in maintenance immunosuppressive therapy following kidney transplantation. We investigated sirolimus effects on cancer incidence among kidney recipients. The US transplant registry was linked with 15 population-based cancer registries and national pharmacy claims. Recipients contributed sirolimus-exposed time when sirolimus claims were filled, and unexposed time when other immunosuppressant claims were filled without sirolimus. Cox regression was used to estimate associations with overall and specific cancer incidence, excluding nonmelanoma skin cancers (not captured in cancer registries). We included 32,604 kidney transplants (5687 sirolimus-exposed). Overall, cancer incidence was suggestively lower during sirolimus use (hazard ratio [HR] = 0.88, 95% confidence interval [CI] = 0.70-1.11). Prostate cancer incidence was higher during sirolimus use (HR = 1.86, 95% CI = 1.15-3.02). Incidence of other cancers was similar or lower with sirolimus use, with a 26% decrease overall (HR = 0.74, 95% CI = 0.57-0.96, excluding prostate cancer). Results were similar after adjustment for demographic and clinical characteristics. This modest association does not provide strong evidence that sirolimus prevents posttransplant cancer, but it may be advantageous among kidney recipients with high cancer risk. Increased prostate cancer diagnoses may result from sirolimus effects on screen detection. © Copyright 2014 The American Society of Transplantation and the American Society of Transplant Surgeons.

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

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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

DOE Research Contributions to Radiation and Cancer Therapy

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dropdown arrow Site Map A-Z Index Menu Synopsis DOE Research Contributions to Radiation and Cancer Therapy Possible: DOE Advanced Biomedical Technology Research, page 10 Over the time span of many years, DOE's research has made many contributions to radiation and cancer therapy, including PEREGRINE and Boron Neutron

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.

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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.

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

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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.

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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.

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

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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

Danish Childhood Cancer Registry

DEFF Research Database (Denmark)

Schrøder, Henrik; Rechnitzer, Catherine; Wehner, Peder Skov

2016-01-01

AIM OF DATABASE: The overall aim is to monitor the quality of childhood cancer care in Denmark; to register late effects of treatment; to analyze complications of permanent central venous catheters (CVCs); to study blood stream infections in children with cancer; and to study acute toxicity of high......-dose methotrexate infusions in children with leukemia. STUDY POPULATION: All children below 15 years of age at diagnosis living in Denmark diagnosed after January 1, 1985 according to the International Classification of Diseases 10, including diagnoses DC00-DD48. MAIN VARIABLES: Cancer type, extent of disease......, and outcome of antimicrobial chemotherapy. DESCRIPTIVE DATA: Since 1985, 4,944 children below 15 years of age have been registered in the database. There has been no significant change in the incidence of childhood cancer in Denmark since 1985. The 5-year survival has increased significantly since 1985...

The incidence rate of corpus uteri cancer among females in Saudi Arabia: an observational descriptive epidemiological analysis of data from Saudi Cancer Registry 2001–2008

Directory of Open Access Journals (Sweden)

Alghamdi IG

2014-01-01

Full Text Available Ibrahim G Alghamdi,1 Issam I Hussain,1 Mohamed S Alghamdi,2 Mohamed A El-Sheemy1,3 1University of Lincoln, Brayford Pool, Lincoln, UK; 2Ministry of Health, General Directorate of Health Affairs, Al-Baha, Kingdom of Saudi Arabia; 3Research and Development, Lincoln Hospital, Lincolnshire Hospitals NHS Trust, Lincoln, UK Background: The present study reviews the epidemiological data on corpus uteri cancer among Saudi women, including its frequency, crude incidence rate, and age-standardized incidence rate (ASIR, adjusted by region and year of diagnosis. Methods: A retrospective, descriptive epidemiological analysis was conducted of all the corpus uteri cancer cases recorded in the Saudi Cancer Registry between January 2001 and December 2008. The statistical analyses were performed using descriptive statistics, analysis of variance, Poisson regression, and a simple linear model. Results: A total of 1,060 corpus uteri cancer cases were included. Women aged 60–74 years of age were most affected by the disease. The region of Riyadh in Saudi Arabia had the highest overall ASIR, at 4.4 cases per 100,000 female patients, followed by the eastern region, at 4.2, and Makkah, at 3.7. Jazan, Najran, and Qassim had the lowest average ASIRs, ranging from 0.8 to 1.4. A Poisson regression model using Jazan as the reference revealed that the corpus uteri cancer incidence rate ratio was significantly higher for the regions of Makkah, at 16.5 times (95% confidence interval [CI]: 8.0–23.0, followed by Riyadh, at 16.0 times (95% CI: 9.0–22.0, and the eastern region, at 9.9 times (95% CI: 5.6–17.6. The northern region experienced the highest changes in ASIRs of corpus uteri cancer among female Saudi patients between 2001 and 2008. Conclusion: There was a slight increase in the crude incidence rates and ASIRs for corpus uteri cancer in Saudi Arabia between 2001 and 2008. Older Saudi women were most affected by the disease. Riyadh, the eastern region, and Makkah

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

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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.

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

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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.

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

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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 risk associated with circumferential resection margin positivity ranged from 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.

eRegistries: Electronic registries for maternal and child health.

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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

Adjuvant brachytherapy removes survival disadvantage of local disease extension in stage IIIC endometrial cancer: a SEER registry analysis.

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

2008-01-01

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

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

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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.

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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.

Correcting for catchment area nonresidency in studies based on tumor-registry data

International Nuclear Information System (INIS)

Sposto, R.; Preston, D.L.

1993-05-01

We discuss the effect of catchment area nonresidency on estimates of cancer incidence from a tumor-registry-based cohort study and demonstrate that a relatively simple correction is possible in the context of Poisson regression analysis if individual residency histories or the probabilities of residency are known. A comparison of a complete data maximum likelihood analysis with several Poisson regression analyses demonstrates the adequacy of the simple correction in a large simulated data set. We compare analyses of stomach-cancer incidence from the Radiation Effects Research Foundation tumor registry with and without the correction. We also discuss some implications of including cases identified only on the basis of death certificates. (author)

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

Directory of Open Access Journals (Sweden)

Velikova Galina

2011-10-01

Full Text Available Abstract Background 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. Methods/Design 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

ISHKS joint registry: A preliminary report.

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Pachore, Jawahir A; Vaidya, Shrinand V; Thakkar, Chandrasekhar J; Bhalodia, Haresh Kumar P; Wakankar, Hemant M

2013-09-01

Total knee arthroplasty (TKA) and total hip arthroplasty (THA) are the most widely practiced surgical options for arthritis all over the world and its application is rising in India. Indian Society of Hip and Knee Surgeons (ISHKS) has established a joints registry and has been collecting data for last 6 years. All members of ISHKS are encouraged to actively participate in the registry. A simple two page knee and hip form can be downloaded from the website www.ishks.com. The information collected includes patient demographics, indication for surgery, implant details and in case of revision arthroplasty: the details of implants removed and the cause of failure of primary arthroplasty. These forms are mailed to the central registry office and the data is fed in computerized registry. Data collection started in October 2006. Joint registry is a very important initiative of ISHKS and till date, have data of 34,478 TKAs and 3604 THAs, contributed by 42 surgeons across India. Some important observations have emerged. Data of 34,478 TKAs was assessed: These included 8612 males (25%) and 25,866 females (75%). Average age was 64.4 years (Osteoarthritis range: 45 to 88 years; Rheumatoid arthritis range: 22 to 74 years). Average body mass index was 29.1 (Range: 18.1 to 42.9). The indication for TKA was osteoarthritis in 33,444 (97%) and rheumatoid arthritis in 759 (2.2%). Total of 3604 THA procedures were recorded. These included 2162 (60%) male patients and 1442 (40%) female patients. Average age was 52 years (Range 17 to 85 years) and average BMI was 25.8 (Range: 17.3 to 38.5). The indications for THA was AVN in 49%. The registry will become more meaningful in years to come. Active participation of all arthroplasty surgeons across India is vital for the success of the joints registry.

Coupled variable selection for regression modeling of complex treatment patterns in a clinical cancer registry.

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Schmidtmann, I; Elsäßer, A; Weinmann, A; Binder, H

2014-12-30

For determining a manageable set of covariates potentially influential with respect to a time-to-event endpoint, Cox proportional hazards models can be combined with variable selection techniques, such as stepwise forward selection or backward elimination based on p-values, or regularized regression techniques such as component-wise boosting. Cox regression models have also been adapted for dealing with more complex event patterns, for example, for competing risks settings with separate, cause-specific hazard models for each event type, or for determining the prognostic effect pattern of a variable over different landmark times, with one conditional survival model for each landmark. Motivated by a clinical cancer registry application, where complex event patterns have to be dealt with and variable selection is needed at the same time, we propose a general approach for linking variable selection between several Cox models. Specifically, we combine score statistics for each covariate across models by Fisher's method as a basis for variable selection. This principle is implemented for a stepwise forward selection approach as well as for a regularized regression technique. In an application to data from hepatocellular carcinoma patients, the coupled stepwise approach is seen to facilitate joint interpretation of the different cause-specific Cox models. In conditional survival models at landmark times, which address updates of prediction as time progresses and both treatment and other potential explanatory variables may change, the coupled regularized regression approach identifies potentially important, stably selected covariates together with their effect time pattern, despite having only a small number of events. These results highlight the promise of the proposed approach for coupling variable selection between Cox models, which is particularly relevant for modeling for clinical cancer registries with their complex event patterns. Copyright © 2014 John Wiley & Sons

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

Science.gov (United States)

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

Use of a cancer registry is preferable to a direct-to-community approach for recruitment to a cohort study of wellbeing in women newly diagnosed with invasive breast cancer

Directory of Open Access Journals (Sweden)

Farrugia Helen

2008-05-01

Full Text Available Abstract Background Breast cancer (BC mortality is declining such that the number of survivors of BC in the community is increasing. BC survivors report a range of sequelae from their cancer and its management beyond the period of their immediate treatment. Previous studies to document these have generally been small, clinic-based or commenced years after diagnosis. We have recruited a large cohort of women newly diagnosed with invasive BC from the community who will be followed for five years in order to systematically document the physical, psychological and socio-economic consequences of BC and its treatment. The aim of this manuscript is to describe the issues encountered in the recruitment of this community-based study population. Methods Women residing in the southern Australian state of Victoria newly diagnosed with invasive BC were recruited to this cohort study using two approaches: directly from the community using an advertising campaign and contemporaneously using an invitation to participate from the Victorian Cancer Registry (VCR. Results Over the two and half year recruitment period, 2135 women were recruited and agreed to receive the enrollment questionnaire (EQ. Of these, 1684 women were eligible and completed an EQ, with the majority of participants having been recruited through the VCR (n = 1321. Only 16% of women contacted by the VCR actively refused participation following a letter of invitation and phone follow-up. The age distribution and tumour characteristics of participants are consistent with state-wide data and their residential postcodes include 400 of a possible 699. Recruitment through a direct community awareness program aimed at women with newly diagnosed invasive BC was difficult, labour-intensive and expensive. Barriers to the recruitment process were identified. Conclusion Most of the women in this study were recruited through a state-based cancer registry. Limitations to recruitment occurred because we

Survival of patients with hepatocellular carcinoma in the San Joaquin Valley: a comparison with California Cancer Registry data.

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Atla, Pradeep R; Sheikh, Muhammad Y; Mascarenhas, Ranjan; Choudhury, Jayanta; Mills, Paul

2012-01-01

Variation in the survival of patients with hepatocellular carcinoma (HCC) is related to racial differences, socioeconomic disparities and treatment options among different populations. A retrospective review of the data from medical records of patients diagnosed with HCC were analyzed at an urban tertiary referral teaching hospital and compared to patients in the California Cancer Registry (CCR) - a participant in the Survival Epidemiology and End Results (SEER)program of the National Cancer Institute (NCI). The main outcome measure was overall survival rates. 160 patients with the diagnosis of HCC (M/F=127/33), mean age 59.7±10 years, 32% white, 49% Hispanic, 12% Asian and 6% African American. Multivariate analysis identified tumor size, model for end-stage liver disease (MELD) score, portal vein invasion and treatment offered as the independent predictors of survival (p <0.05). Survival rates across racial groups were not statistically significant. 5.6% received curative treatments (orthotopic liver transplantation, resection, rediofrequency ablation) (median survival 69 months), 34.4% received nonsurgical treatments (trans-arterial chemoembolization, systemic chemotherapy) (median survival 9 months), while 60% received palliative or no treatment (median survival 3 months) (p <0.001). There was decreased survival in our patient population with HCC beyond 2 years. 60% of our study population received only palliative or no treatment suggesting a possible lack of awareness of chronic liver disease as well as access to appropriate surveillance modalities. Ethnic disparities such as Hispanic predominance in this study in contrast to the CCR/SEER database may have been a contributing factor for poorer outcome.

Utility of an Australasian registry for children undergoing radiation treatment

International Nuclear Information System (INIS)

Ahern, Verity

2014-01-01

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 16years 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 10–15years, 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.

EMI Registry Design

CERN Document Server

Memon, S

2011-01-01

Grid services are the fundamental building blocks of today's Distributed Computing Infrastructures (DCI). The discovery of services in the DCI is a primary function that is a precursor to other tasks such as workload and data management. In this context, a service registry can be used to fulfil such a requirement. Existing service registries, such as the ARC Information Index or UNICORE Registry, are examples that have proven themselves in production environments. Such implementations provide a centralized service registry, however, todays DCIs, such as EGI, are based on a federation model. It is therefore necessary for the service registry to mirror such a model in order for it to seamlessly fit into the operational and management requirements - a DCI built using federated approach. This document presents an architecture for a federated service registry and a prototype based on this architecture, the EMI Registry. Special attention is given to how the federated service registry is robust to environment failu...

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

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

2016-06-27

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

Fear Arousing Persuasive Communication: The Use of Threat and Coping Appraisal in Breast Cancer Messages

OpenAIRE

Karuoya Simon Njoroge; Helen Mberia

2014-01-01

At present, breast cancer is having a severe effect in Kenya and it forms a serious threat to Kenyan women. In Kenya, breast cancer is the most common reproductive organ cancer which contributed 23% of all female cancers with one out of every nine women being diagnosed with advanced breast cancer (Neondo, 2006). According to the regional cancer registry at Kenya Medical Research Institute, about 80% of reported cases of cancer in Kenya are diagnosed at advanced stages, when very little can be...

The nursing contribution to nutritional care in cancer cachexia.

Science.gov (United States)

Hopkinson, Jane B

2015-11-01

Cancer cachexia is a complex syndrome. Its defining feature is involuntary weight loss, which arises, in part, because of muscle atrophy and is accompanied by functional decline. International expert consensus recommends that nutritional support and counselling is a component of multimodal therapy for cancer cachexia, as poor nutritional intake can contribute to progression of the syndrome. The present paper focuses on what is presently known about the nursing contribution to nutritional care in cancer cachexia. There is potential for nurses to play an important role. However, obstacles to this include lack of a robust evidence base to support their nutritional care practices and unmet need for education about nutrition in cancer. The nursing role's boundaries and the outcomes of nurse-delivered nutritional care in cancer cachexia are both uncertain and should be investigated.

ISHKS joint registry: A preliminary report

Directory of Open Access Journals (Sweden)

Jawahir A Pachore

2013-01-01

form can be downloaded from the website www.ishks.com. The information collected includes patient demographics, indication for surgery, implant details and in case of revision arthroplasty: the details of implants removed and the cause of failure of primary arthroplasty. These forms are mailed to the central registry office and the data is fed in computerized registry. Data collection started in October 2006. Results: Joint registry is a very important initiative of ISHKS and till date, have data of 34,478 TKAs and 3604 THAs, contributed by 42 surgeons across India. Some important observations have emerged. Data of 34,478 TKAs was assessed: These included 8612 males (25% and 25,866 females (75%. Average age was 64.4 years (Osteoarthritis range: 45 to 88 years; Rheumatoid arthritis range: 22 to 74 years. Average body mass index was 29.1 (Range: 18.1 to 42.9. The indication for TKA was osteoarthritis in 33,444 (97% and rheumatoid arthritis in 759 (2.2%. Total of 3604 THA procedures were recorded. These included 2162 (60% male patients and 1442 (40% female patients. Average age was 52 years (Range 17 to 85 years and average BMI was 25.8 (Range: 17.3 to 38.5. The indications for THA was AVN in 49%. Conclusion: The registry will become more meaningful in years to come. Active participation of all arthroplasty surgeons across India is vital for the success of the joints registry.

Development of the cancer registration system in Belarus

International Nuclear Information System (INIS)

Okeanov, A.E.; Polyakov, S.M.; Sobolev, A.V.; Winkelmann, R.A.; Storm, H.H.

1996-01-01

Cancer registration was established in Belarus in 1953, however was not complete until the 1970's. In 1973 a computerized central cancer registry was established (files available only from 1978) based on coded and anonymous information received from each of the 12 oncological dispensaries in the country. In 1985 a computer system of dispensary control for cancer patients was set up in the oncological dispensaries in Belarus, whereby identification of individual cancer patients in the cancer registry was made possible. The Belarussian cancer registry records all cases of cancer including those of the lymph-hematopoietic system, and carcinoma in situ. The registry is person-based with information on all tumors and their treatment in a given individual. Coding and classification is carried out in accordance with ICD-9. For histology a local classification is used. Currently the registration system is under modernization in order to achieve full correspondence with internationally accepted standards and for the purpose of easy linkage to the Belarussian Chernobyl Registry

Going the distance for certified cancer registrars.

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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.

Breast Cancer in Systemic Lupus Erythematosus

DEFF Research Database (Denmark)

Tessier Cloutier, B; Clarke, A E; Ramsey-Goldman, R

2013-01-01

Evidence points to a decreased breast cancer risk in systemic lupus erythematosus (SLE). We analyzed data from a large multisite SLE cohort, linked to cancer registries.......Evidence points to a decreased breast cancer risk in systemic lupus erythematosus (SLE). We analyzed data from a large multisite SLE cohort, linked to cancer registries....

Prospective evaluation of patient-reported quality of life outcomes after external beam radiation treatment for prostate cancer in Victoria: A cohort study by the Victorian Prostate Cancer Registry

International Nuclear Information System (INIS)

Bandarage, V.R.K. Patabendi; Billah, Baki; Evans, Sue; Millar, Jeremy L.

2016-01-01

External beam radiation treatment (EBRT) for prostate cancer (CaP) can cause adverse effects on bowel, bladder and sexual function. We aimed to use CaP clinical registry data to evaluate variation in patient adverse effects after EBRT in Victoria. Study subjects were men diagnosed with primary CaP between 2009 and 2014, treated with EBRT in metropolitan Melbourne, or in one of three regional integrated cancer service (ICS) regions. Information on change in general and disease-specific health outcome 12 and 24 months after the initial diagnosis were obtained using a modified Expanded CaP index composite (EPIC)-26 survey and there was no variation of follow up between ICSs. The proportion of men with ‘big bother’ (the most troublesome category) was compared between the ICS regions in Victoria (n = 1,825). There was no difference in big bother in urinary and sexual function across the regions at 24 months. However, patients treated in one regional cancer service had a higher proportion with ‘big bother’ (11.1%) compared with the rest of the Victoria (4.8%); (χ2 = 4.85; P = 0.02). The only significant factor for this was the location of EBRT (odds ratio = 2.6; 95% confidence interval: 1.12–6.04; P = 0.02). There was no association over time in that region with change in EBRT technique from 3-D conformal radiation therapy to intensity-modulated radiation therapy (z-test for proportion: 0.77; P: 0.44). A comprehensive clinical cancer registry system, can be used to benchmark outcomes for men diagnosed with CaP and may detect clinically relevant variations that require further detailed evaluation and response.

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

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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.

Does stage of cancer, comorbidity or lifestyle factors explain educational differences in survival after endometrial cancer?

DEFF Research Database (Denmark)

Seidelin, Ulla Holten; Ibfelt, Else; Andersen, Ingelise

2016-01-01

characteristics, surgery, body mass index (BMI) and smoking status. Information on highest attained education, cohabitation and comorbidity was obtained from nationwide administrative registries. Logistic regression models were used to determine the association between level of education and cancer stage and Cox......Background: Several studies have documented an association between socioeconomic position and survival from gynaecological cancer, but the mechanisms are unclear. Objective: The aim of this study was to examine the association between level of education and survival after endometrial cancer among...... Danish women; and whether differences in stage at diagnosis and comorbidity contribute to the educational differences in survival. Methods: Women with endometrial cancer diagnosed between 2005 and 2009 were identified in the Danish Gynaecological Cancer Database, with information on clinical...

Contributions of 3D Cell Cultures for Cancer Research.

Science.gov (United States)

Ravi, Maddaly; Ramesh, Aarthi; Pattabhi, Aishwarya

2017-10-01

Cancer cell lines have contributed immensely in understanding the complex physiology of cancers. They are excellent material for studies as they offer homogenous samples without individual variations and can be utilised with ease and flexibility. Also, the number of assays and end-points one can study is almost limitless; with the advantage of improvising, modifying or altering several variables and methods. Literally, a new dimension to cancer research has been achieved by the advent of 3Dimensional (3D) cell culture techniques. This approach increased many folds the ways in which cancer cell lines can be utilised for understanding complex cancer biology. 3D cell culture techniques are now the preferred way of using cancer cell lines to bridge the gap between the 'absolute in vitro' and 'true in vivo'. The aspects of cancer biology that 3D cell culture systems have contributed include morphology, microenvironment, gene and protein expression, invasion/migration/metastasis, angiogenesis, tumour metabolism and drug discovery, testing chemotherapeutic agents, adaptive responses and cancer stem cells. We present here, a comprehensive review on the applications of 3D cell culture systems for these aspects of cancers. J. Cell. Physiol. 232: 2679-2697, 2017. © 2016 Wiley Periodicals, Inc. © 2016 Wiley Periodicals, Inc.

Windows registry forensics advanced digital forensic analysis of the Windows registry

CERN Document Server

Carvey, Harlan

2011-01-01

Harlan Carvey brings readers an advanced book on Windows Registry - the most difficult part of Windows to analyze in forensics! Windows Registry Forensics provides the background of the Registry to help develop an understanding of the binary structure of Registry hive files. Approaches to live response and analysis are included, and tools and techniques for postmortem analysis are discussed at length. Tools and techniques will be presented that take the analyst beyond the current use of viewers and into real analysis of data contained in the Registry. This book also has a DVD containing tools, instructions and videos.

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

Science.gov (United States)

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

2015-01-01

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

Quality of care achievements of the Prostate Cancer Outcomes Registry-Victoria.

Science.gov (United States)

Sampurno, Fanny; Earnest, Arul; Kumari, Patabendi B; Millar, Jeremy L; Davis, Ian D; Murphy, Declan G; Frydenberg, Mark; Kearns, Paul A; Evans, Sue M

2016-05-02

To analyse the performance of the quality of prostate cancer (CaP) care over a 5-year period with reference to three quality indicators (QIs) reported by the Prostate Cancer Outcomes Registry-Victoria (PCOR-Vic):QI-1: Alignment with the modified Prostate Cancer Research International Active Surveillance (PRIAS) protocol guideline;QI-2: Timeliness of CaP care for men with high risk and locally advanced disease;QI-3: Positive surgical margins (PSMs) for organ-confined pathological T2 disease. Between 1 January 2009 and 31 December 2013, 4708 men diagnosed with CaP who met the QI-1, QI-2 or QI-3 inclusion criteria were recruited from Victorian hospitals.Outcome measures and statistical analysis: Trend analysis was conducted to monitor performance according to QI-1, QI-2 and QI-3. We used the autoregressive integrated moving average (ARIMA) model to account for any inherent autocorrelation in the data when analysing the monthly incidence of each indicator. Differences in the annual figures for the indicators across years were also analysed by aggregating data by year and applying the ARIMA model. There was a downward trend over the 5 years in the percentage of men with low risk disease who underwent active treatment (45% to 34%; P = 0.024), an upward trend in the percentage of those with high risk and locally advanced disease who received active treatment within 12 months of diagnosis (88% to 93%; P = 0.181), and a decline in PSM rate in men with pathological T2 disease after radical prostatectomy (21% to 12%; P = 0.036). Limitations of the study include the fact that the improvement in the QIs was detected using PCOR-Vic as a single population, but there may be institutional variations in quality improvement. Over 2009-2013, the performance of the Victorian health system improved according to the three processes of care indicators reported by the PCOR-Vic.

Incidence of pancreatic cancer in Denmark

DEFF Research Database (Denmark)

Weble, Tanja Cruusberg; Bjerregaard, Jon Kroll; Kissmeyer, Peter

2017-01-01

BACKGROUND: The aim of this study was to monitor the evolution of the incidence of pancreatic cancer in Denmark over 70 years. We also compared registrations of pancreatic cancer in a nationwide population-based database, the Danish Cancer Registry, and a clinical database, the Danish Pancreatic...... Cancer Database, in 2012-2013. MATERIAL AND METHODS: Registrations of pancreatic cancer from the Danish Cancer Registry over 1943-2012 were used to calculate age-specific incidence rates per 100 000 person years by sex and age in 5-year period, weighted by the Segi World Standard Population for age...... standardization. We used absolute numbers from the Cancer Registry and the Pancreatic Cancer Database, including distribution of topography of cancers registered in 2012-2013, to compare registration in the two data sources. RESULTS: The incidence rates of pancreatic cancer among Danish men increased until 1968...

The Brazilian Twin Registry.

Science.gov (United States)

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

2016-12-01

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

Informatics Tools and Methods to Enhance U.S. Cancer Surveillance Research, UG3/UH3 | Informatics Technology for Cancer Research (ITCR)

Science.gov (United States)

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).

Characterizing inflammatory breast cancer among Arab Americans in the California, Detroit and New Jersey Surveillance, Epidemiology and End Results (SEER) registries (1988-2008).

Science.gov (United States)

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

Increasing incidence of thyroid cancer in the Commonwealth of Pennsylvania.

Science.gov (United States)

Bann, Darrin V; Goyal, Neerav; Camacho, Fabian; Goldenberg, David

2014-12-01

The incidence of thyroid cancer in the United States has increased rapidly and Pennsylvania is the state with the highest rate of thyroid cancer in the country, although the factors driving this increase are unknown. Moreover, it remains unclear whether the increase in thyroid cancer represents a true increase in disease or is the result of overdiagnosis. To compare the increase in thyroid cancer incidence and tumor characteristics in Pennsylvania with the rest of the United States and gain insight into the factors influencing the increased incidence of thyroid cancer. In a population-based study, data on thyroid cancer from the Surveillance Epidemiology and End Results 9 (SEER-9) registry and the Pennsylvania Cancer Registry (PCR) from 1985 through 2009 were collected and reviewed for information regarding sex, race, histologic type of thyroid cancer, staging, and tumor size at diagnosis. International Classification of Diseases for Oncology, Third Edition code C739 (thyroid carcinoma) was used to identify 110,615 records in the SEER-9 registry and 29,030 records in the PCR. Average annual percent change (AAPC) in thyroid cancer incidence across various demographic groups in Pennsylvania. The AAPC for thyroid cancer in Pennsylvania was 7.1% per year (95% CI, 6.3%-7.9%) vs 4.2% (95% CI, 3.7%-4.7%) per year in the remainder of the United States, and trends in incidence were significantly different (P Pennsylvania than in the rest of the nation, as is the rate of tumors that are larger and higher stage at diagnosis. These findings suggest that rising disease burden has contributed to the increased incidence of thyroid cancer. Etiologic factors promoting the rise in thyroid cancer in Pennsylvania must be investigated and may provide insight into the drivers of the national increase in thyroid cancer.

Breast cancer trends differ by ethnicity: a report from the South African National Cancer Registry (1994-2009).

Science.gov (United States)

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.

Science.gov (United States)

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

Italian cancer figures, report 2009: Cancer trend (1998-2005).

Science.gov (United States)

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

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

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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.

Prognostic value of tumor volumetry data of routine imaging data in a head and neck cancer registry.

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Oemus, Daniela; Inhestern, Johanna; Schmalenberg, Harald; Schultze-Mosgau, Stefan; Mentzel, Hans-Joachim; Guntinas-Lichius, Orlando

2014-09-01

The purpose of this study was to analyze the impact of tumor volume (TV) measurements as prognosticator for recurrence-free survival (RFS) and overall survival (OS) from data of head and neck cancer (HNC) registries. TV measurements were performed in pre-treatment computed tomography (CT) or magnetic resonance images (MRI) of 392 unselected HNC patients. TV measurements were feasible in 275 patients (70 %). Median CT TV and MRI TV were 11.43 and 10.4 cm(3), respectively. The CT TV was significantly different only between T1 and T4. CT TV was significantly different only between T1 and T4 (p = 0.041). MRI TV was significantly different between T1 and T4 (p = 0.003) as well as between T2 and T4 (p = 0.002). Median follow-up was 26.1 months. Median RFS was 80.7 months. Median OS was 66.5 months. On univariate analysis, significant prognostic factors for decreased RFS were advanced T stage (p = 0.010); M1 (p = 0.001) and an MRI TV > 10.4 cm(3) (p = 0.001). Significant prognostic factors for a decreased OS were advanced T stage (p = 0.001), N+ (p = 0 006), M+ (p TV (p = 0.005), and MRI TV (p = 0.012). On multivariate analysis for RFS, MRI TV was the best independent prognosticator (p = 0.003). On multivariate analysis for OS, T stage (p = 0.006) was a better prognosticator than CT or MRI TV. Using CT and MRI data sets of an unselected series of HNC patients in a cancer registry, TV measurements were not feasible in all patients. MRT TV was a powerful prognosticator for RFS.

[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].

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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.

Danish Gynecological Cancer Database

DEFF Research Database (Denmark)

Sørensen, Sarah Mejer; Bjørn, Signe Frahm; Jochumsen, Kirsten Marie

2016-01-01

AIM OF DATABASE: The Danish Gynecological Cancer Database (DGCD) is a nationwide clinical cancer database and its aim is to monitor the treatment quality of Danish gynecological cancer patients, and to generate data for scientific purposes. DGCD also records detailed data on the diagnostic measures...... data forms as follows: clinical data, surgery, pathology, pre- and postoperative care, complications, follow-up visits, and final quality check. DGCD is linked with additional data from the Danish "Pathology Registry", the "National Patient Registry", and the "Cause of Death Registry" using the unique...... Danish personal identification number (CPR number). DESCRIPTIVE DATA: Data from DGCD and registers are available online in the Statistical Analysis Software portal. The DGCD forms cover almost all possible clinical variables used to describe gynecological cancer courses. The only limitation...

National and Subnational Population-Based Incidence of Cancer in Thailand: Assessing Cancers with the Highest Burdens

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Shama Virani

2017-08-01

Full Text Available In Thailand, five cancer types—breast, cervical, colorectal, liver and lung cancer—contribute to over half of the cancer burden. The magnitude of these cancers must be quantified over time to assess previous health policies and highlight future trajectories for targeted prevention efforts. We provide a comprehensive assessment of these five cancers nationally and subnationally, with trend analysis, projections, and number of cases expected for the year 2025 using cancer registry data. We found that breast (average annual percent change (AAPC: 3.1% and colorectal cancer (female AAPC: 3.3%, male AAPC: 4.1% are increasing while cervical cancer (AAPC: −4.4% is decreasing nationwide. However, liver and lung cancers exhibit disproportionately higher burdens in the northeast and north regions, respectively. Lung cancer increased significantly in northeastern and southern women, despite low smoking rates. Liver cancers are expected to increase in the northern males and females. Liver cancer increased in the south, despite the absence of the liver fluke, a known factor, in this region. Our findings are presented in the context of health policy, population dynamics and serve to provide evidence for future prevention strategies. Our subnational estimates provide a basis for understanding variations in region-specific risk factor profiles that contribute to incidence trends over time.

Increased colon cancer risk after severe Salmonella infection.

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Lapo Mughini-Gras

Full Text Available Colon cancer constitutes one of the most frequent malignancies. Previous studies showed that Salmonella manipulates host cell signaling pathways and that Salmonella Typhimurium infection facilitates colon cancer development in genetically predisposed mice. This epidemiological study examined whether severe Salmonella infection, usually acquired from contaminated food, is associated with increased colon cancer risk in humans.We performed a nationwide registry-based study to assess colon cancer risk after diagnosed Salmonella infection. National infectious disease surveillance records (1999-2015 for Dutch residents aged ≥20 years when diagnosed with salmonellosis (n = 14,264 were linked to the Netherlands Cancer Registry. Salmonella-infected patients were laboratory-confirmed under medical consultation after 1-2 weeks of illness. These datasets also contained information on Salmonella serovar and type of infection. Colon cancer risk (overall and per colon subsite among patients with a diagnosed Salmonella infection was compared with expected colon cancer risk in the general population. Data from the nationwide registry of histo- and cytopathology (PALGA and Statistics Netherlands (CBS allowed assessing potential effects of age, gender, latency, socioeconomic status, genetic predisposition, inflammatory bowel disease (IBD, and tumor features. We found that compared to the general population, colon cancer risk was significantly increased (standardized incidence ratio [SIR] 1.54; 95%CI 1.09-2.10 among patients with Salmonella infection diagnosed <60 years of age. Such increased risk concerned specifically the ascending/transverse colon (SIR 2.12; 95%CI 1.38-3.09 after S. Enteritidis infection (SIR 2.97; 95%CI 1.73-4.76. Salmonellosis occurred more frequently among colon cancer patients with pre-infectious IBD, a known risk factor for colon cancer. Colon tumors of patients with a history of Salmonella infection were mostly of low grade

Increased colon cancer risk after severe Salmonella infection

Science.gov (United States)

Mooij, Sofie; Neefjes-Borst, E. Andra; van Pelt, Wilfrid; Neefjes, Jacques

2018-01-01

Background Colon cancer constitutes one of the most frequent malignancies. Previous studies showed that Salmonella manipulates host cell signaling pathways and that Salmonella Typhimurium infection facilitates colon cancer development in genetically predisposed mice. This epidemiological study examined whether severe Salmonella infection, usually acquired from contaminated food, is associated with increased colon cancer risk in humans. Methods and findings We performed a nationwide registry-based study to assess colon cancer risk after diagnosed Salmonella infection. National infectious disease surveillance records (1999–2015) for Dutch residents aged ≥20 years when diagnosed with salmonellosis (n = 14,264) were linked to the Netherlands Cancer Registry. Salmonella-infected patients were laboratory-confirmed under medical consultation after 1–2 weeks of illness. These datasets also contained information on Salmonella serovar and type of infection. Colon cancer risk (overall and per colon subsite) among patients with a diagnosed Salmonella infection was compared with expected colon cancer risk in the general population. Data from the nationwide registry of histo- and cytopathology (PALGA) and Statistics Netherlands (CBS) allowed assessing potential effects of age, gender, latency, socioeconomic status, genetic predisposition, inflammatory bowel disease (IBD), and tumor features. We found that compared to the general population, colon cancer risk was significantly increased (standardized incidence ratio [SIR] 1.54; 95%CI 1.09–2.10) among patients with Salmonella infection diagnosed transverse colon (SIR 2.12; 95%CI 1.38–3.09) after S. Enteritidis infection (SIR 2.97; 95%CI 1.73–4.76). Salmonellosis occurred more frequently among colon cancer patients with pre-infectious IBD, a known risk factor for colon cancer. Colon tumors of patients with a history of Salmonella infection were mostly of low grade. Conclusions Patients diagnosed with severe

Name Recognition to Identify Patients of South Asian Ethnicity within the Cancer Registry

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Savitri Singh-Carlson

2016-01-01

Full Text Available Objective: The goal of this project was to develop a list of forenames and surnames of South Asian (SA women that could be used to identify SA breast cancer patients within the cancer registry. This list was compiled, evaluated, and validated to ensure comprehensiveness, accuracy, and applicability of SA names. Methods: This project was conducted by Canadian researchers who are immersed in conducting behavioral studies with SA women diagnosed with cancer in the province of British Columbia. Recruiting SA cancer patients for research can be a difficult task due to social and cultural factors. Methods used by other researchers to identify ethnicity related unique names were employed to filter surnames and forenames that were not common to this ethnic group. Co-author (Gurpreet Oshan of SA ethnicity rigorously identified and deleted multiple lists and redundant entries along with common English forenames which resulted in a list of 16,888 SA forenames. All co-authors of Indian ethnicity (Gurpreet Oshan, Savitri Singh-Carlson, Harajit Lail were involved in critiquing and manually reviewing the names list throughout this process. Comprehensive lists of SA surnames and women′s forenames were reviewed to identify those that were unique to SA ethnicity. Accuracy was ensured by constantly filtering the redundancy by using an Excel program which helped to illustrate the number of times each name was spelled in different ways. Results: The final lists included 9112 surnames and 16,888 forenames of SA ethnicity. On the basis of the surname linkage only, the sensitivity of the list was 76.6%, specificity was 62.9%, and the positive predictive value was 58.5%. On the basis of both the surname and forename linkage, the specificity of the list was 88.6%. These lists include variations in spelling forenames and surnames as well. Conclusions: The list of surnames and forenames can be useful tools to identify SA ethnic groups from large population database in

Incidence, therapy and prognosis of colorectal cancer in different age groups. A population-based cohort study of the Rostock Cancer Registry

International Nuclear Information System (INIS)

Fietkau, R.; Zettl, H.; Kloecking, S.; Kundt, G.

2004-01-01

Purpose: Determination of frequency, treatment modalities used and prognoses of colorectal cancer in a population-specific analysis in relation to age. Material and methods: In 1999 and 2000, 644/6,016 patients were documented as having colorectal carcinomas in the Cancer Registry of Rostock. 39 patients were excluded (16 cases: 'in situ' carcinomas; 23 cases: insufficient data). Three age groups were formed: <60 years, 60-74 years; ≥75 years. Results: The relative percentage of colorectal cancer increases with advanced age (<60 years 7%; 60-74 years 12%, ≥75 years 15%; p<0.001). In older patients with stage III carcinomas, adjuvant treatment was done less frequently in accordance with the treatment recommendations (<60 years 83-89%; 60-74 years 67-77%; ≥75 years 29-36% according to stage and tumor localization); in stage IV, the use of chemotherapy was reduced (<60 years 87.5-100%; 60-74 years 38-47%; ≥75 years 33-37%). In the univariate analysis, age ≥75 years (4-year survival rates: <60 years 68±4.1%; 60-74 years 58±2.8%; ≥75 years 38±3.7%), UICC stage and surgical treatment had a significant effect on prognosis. Adjuvant treatment had no significant effect on the whole population but on patients with UICC stage III and IV. In the multivariate analysis, however, the only independent prognostic parameters were age ≥75 years (p=0.001), performance of chemotherapy (colon cancer) or radiochemotherapy (rectal cancer; p=0.004-0.001), and tumor stage (p=0.045-0.001). Sex (p=0.063) and age between 60 and 74 years (p=0.067) had a borderline influence. Conclusion: With increasing age, there is a departure in daily practice from the treatment recommendations. The patient's prognosis is dependent upon age (especially ≥75 years), tumor stage, and therapy. (orig.)

Incidence, therapy and prognosis of colorectal cancer in different age groups. A population-based cohort study of the Rostock Cancer Registry

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Fietkau, R.; Zettl, H.; Kloecking, S. [University of Rostock (Germany). Department of Radiotherapy; Kundt, G. [University of Rostock (Germany). Institute of Medical Informatics and Biometry

2004-08-01

Purpose: Determination of frequency, treatment modalities used and prognoses of colorectal cancer in a population-specific analysis in relation to age. Material and methods: In 1999 and 2000, 644/6,016 patients were documented as having colorectal carcinomas in the Cancer Registry of Rostock. 39 patients were excluded (16 cases: 'in situ' carcinomas; 23 cases: insufficient data). Three age groups were formed: <60 years, 60-74 years; {>=}75 years. Results: The relative percentage of colorectal cancer increases with advanced age (<60 years 7%; 60-74 years 12%, {>=}75 years 15%; p<0.001). In older patients with stage III carcinomas, adjuvant treatment was done less frequently in accordance with the treatment recommendations (<60 years 83-89%; 60-74 years 67-77%; {>=}75 years 29-36% according to stage and tumor localization); in stage IV, the use of chemotherapy was reduced (<60 years 87.5-100%; 60-74 years 38-47%; {>=}75 years 33-37%). In the univariate analysis, age {>=}75 years (4-year survival rates: <60 years 68{+-}4.1%; 60-74 years 58{+-}2.8%; {>=}75 years 38{+-}3.7%), UICC stage and surgical treatment had a significant effect on prognosis. Adjuvant treatment had no significant effect on the whole population but on patients with UICC stage III and IV. In the multivariate analysis, however, the only independent prognostic parameters were age {>=}75 years (p=0.001), performance of chemotherapy (colon cancer) or radiochemotherapy (rectal cancer; p=0.004-0.001), and tumor stage (p=0.045-0.001). Sex (p=0.063) and age between 60 and 74 years (p=0.067) had a borderline influence. Conclusion: With increasing age, there is a departure in daily practice from the treatment recommendations. The patient's prognosis is dependent upon age (especially {>=}75 years), tumor stage, and therapy. (orig.)

Clinical Case Registries (CCR)

Data.gov (United States)

Department of Veterans Affairs — The Clinical Case Registries (CCR) replaced the former Immunology Case Registry and the Hepatitis C Case Registry with local and national databases. The CCR:HIV and...

Look local: the value of cancer surveillance and reporting by American Indian clinics.

Science.gov (United States)

Creswell, Paul D; Strickland, Rick; Stephenson, Laura; Pierce-Hudson, Kimmine; Matloub, Jacqueline; Waukau, Jerry; Adams, Alexandra; Kaur, Judith; Remington, Patrick L

2013-11-27

Cancer incidence and mortality rates for American Indians in the Northern Plains region of the United States are among the highest in the nation. Reliable cancer surveillance data are essential to help reduce this burden; however, racial data in state cancer registries are often misclassified, and cases are often underreported. We used a community-based participatory research approach to conduct a retrospective ascertainment of cancer cases in clinic medical records over a 9-year period (1995-2003) and compared the results with the state cancer registry to evaluate missing or racially misclassified cases. Six tribal and/or urban Indian clinics participated in the study. The project team consisted of participating clinics, a state cancer registry, a comprehensive cancer center, an American Indian/Alaska Native Leadership Initiative on Cancer, and a set of diverse organizational partners. Clinic personnel were trained by project staff to accurately identify cancer cases in clinic records. These records were then matched with the state cancer registry to assess misclassification and underreporting. Forty American Indian cases were identified that were either missing or misclassified in the state registry. Adding these cases to the registry increased the number of American Indian cases by 21.3% during the study period (P = .05). Our results indicate that direct reporting of cancer cases by tribal and urban Indian health clinics to a state cancer registry improved the quality of the data available for cancer surveillance. Higher-quality data can advance the efforts of cancer prevention and control stakeholders to address disparities in Native communities.

Radiological Patterns of Brain Metastases in Breast Cancer Patients: A Subproject of the German Brain Metastases in Breast Cancer (BMBC Registry

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Elena Laakmann

2016-09-01

Full Text Available Evidence about distribution patterns of brain metastases with regard to breast cancer subtypes and its influence on the prognosis of patients is insufficient. Clinical data, cranial computed tomography (CT and magnetic resonance imaging (MRI scans of 300 breast cancer patients with brain metastases (BMs were collected retrospectively in four centers participating in the Brain Metastases in Breast Cancer Registry (BMBC in Germany. Patients with positive estrogen (ER, progesterone (PR, or human epidermal growth factor receptor 2 (HER2 statuses, had a significantly lower number of BMs at diagnosis. Concerning the treatment mode, HER2-positive patients treated with trastuzumab before the diagnosis of BMs showed a lower number of intracranial metastases (p < 0.001. Patients with a HER2-positive tumor-subtype developed cerebellar metastases more often compared with HER2-negative patients (59.8% vs. 44.5%, p = 0.021, whereas patients with triple-negative primary tumors had leptomeningeal disease more often (31.4% vs. 18.3%, p = 0.038. The localization of Brain metastases (BMs was associated with prognosis: patients with leptomeningeal disease had shorter survival compared with patients without signs of leptomeningeal disease (median survival 3 vs. 5 months, p = 0.025. A shorter survival could also be observed in the patients with metastases in the occipital lobe (median survival 3 vs. 5 months, p = 0.012. Our findings suggest a different tumor cell homing to different brain regions depending on subtype and treatment.

The Western Denmark Heart Registry

DEFF Research Database (Denmark)

Schmidt, Morten; Maeng, Michael; Madsen, Morten

2018-01-01

The WDHR (Western Denmark Heart Registry) is a seminational, multicenter-based registry with longitudinal registration of detailed patient and procedure data since 1999. The registry includes as of January 1, 2017 approximately 240,000 coronary angiographies, 90,000 percutaneous coronary interven......The WDHR (Western Denmark Heart Registry) is a seminational, multicenter-based registry with longitudinal registration of detailed patient and procedure data since 1999. The registry includes as of January 1, 2017 approximately 240,000 coronary angiographies, 90,000 percutaneous coronary...

Characteristics of incident female breast cancer in Lebanon, 1990-2013: Descriptive study of 612 cases from a hospital tumor registry.

Science.gov (United States)

Chahine, Georges; El Rassy, Elie; Khazzaka, Aline; Saleh, Khalil; Rassy, Nathalie; Khalife, Nadine; Atallah, David

2015-06-01

Despite the fact that breast cancer is a major health issue, very few studies describe its characteristics in the Arab world or the Middle East, particularly in Lebanon. We report in this article a retrospective pilot study of the characteristics of breast cancer in Lebanon. The pathological characteristics of 624 patients diagnosed between 1990 and 2013 randomly chosen from the archives of an oncology clinic affiliated to Hotel Dieu de France Hospital are analyzed. The mean age at diagnosis is 54.6±13.4 years with 43% diagnosed before the age of 50 years. The infiltrative ductal carcinoma represents the major pathological subtype. One third of the tumors had a size of more than 2 cm at diagnosis. Estrogen-receptors are positive in more than 50% of our patients and Her2-neu is overexpresssed in 30%. Luminal A represents 45.5% and the triple negative subgroup constitutes only 8.3%. Breast cancer in Lebanon is evolving to a more indolent disease. Therefore, public awareness and institution of screening programs are required. These programs should be based on national epidemiological data and necessitate the activation of the national cancer registry. Copyright © 2015 Elsevier Ltd. All rights reserved.

Employment and insurance outcomes and factors associated with employment among long-term thyroid cancer survivors: a population-based study from the PROFILES registry.

Science.gov (United States)

Tamminga, S J; Bültmann, U; Husson, O; Kuijpens, J L P; Frings-Dresen, M H W; de Boer, A G E M

2016-04-01

To obtain insight into employment and insurance outcomes of thyroid cancer survivors and to examine the association between not having employment and other factors including quality of life. In this cross-sectional population-based study, long-term thyroid cancer survivors from the Netherlands participated. Clinical data were collected from the cancer registry. Information on employment, insurance, socio-demographic characteristics, long-term side effects, and quality of life was collected with questionnaires. Of the 223 cancer survivors (response rate 87 %), 71 % were employed. Of the cancer survivors who tried to obtain insurance, 6 % reported problems with obtaining health care insurance, 62 % with life insurance, and 16 % with a mortgage. In a multivariate logistic regression analysis, higher age (OR 1.07, CI 1.02-1.11), higher level of fatigue (OR 1.07, CI 1.01-1.14), and lower educational level (OR 3.22, CI 1.46-7.09) were associated with not having employment. Employment was associated with higher quality of life. Many thyroid cancer survivors face problems when obtaining a life insurance, and older, fatigued, and lower educated thyroid cancer survivors may be at risk for not having employment.

Cancer survival in Australia, Canada, Denmark, Norway, Sweden, and the UK, 1995–2007 (the International Cancer Benchmarking Partnership): an analysis of population-based cancer registry data

Science.gov (United States)

Coleman, MP; Forman, D; Bryant, H; Butler, J; Rachet, B; Maringe, C; Nur, U; Tracey, E; Coory, M; Hatcher, J; McGahan, CE; Turner, D; Marrett, L; Gjerstorff, ML; Johannesen, TB; Adolfsson, J; Lambe, M; Lawrence, G; Meechan, D; Morris, EJ; Middleton, R; Steward, J; Richards, MA

2011-01-01

Summary Background Cancer survival is a key measure of the effectiveness of health-care systems. Persistent regional and international differences in survival represent many avoidable deaths. Differences in survival have prompted or guided cancer control strategies. This is the first study in a programme to investigate international survival disparities, with the aim of informing health policy to raise standards and reduce inequalities in survival. Methods Data from population-based cancer registries in 12 jurisdictions in six countries were provided for 2·4 million adults diagnosed with primary colorectal, lung, breast (women), or ovarian cancer during 1995–2007, with follow-up to Dec 31, 2007. Data quality control and analyses were done centrally with a common protocol, overseen by external experts. We estimated 1-year and 5-year relative survival, constructing 252 complete life tables to control for background mortality by age, sex, and calendar year. We report age-specific and age-standardised relative survival at 1 and 5 years, and 5-year survival conditional on survival to the first anniversary of diagnosis. We also examined incidence and mortality trends during 1985–2005. Findings Relative survival improved during 1995–2007 for all four cancers in all jurisdictions. Survival was persistently higher in Australia, Canada, and Sweden, intermediate in Norway, and lower in Denmark, England, Northern Ireland, and Wales, particularly in the first year after diagnosis and for patients aged 65 years and older. International differences narrowed at all ages for breast cancer, from about 9% to 5% at 1 year and from about 14% to 8% at 5 years, but less or not at all for the other cancers. For colorectal cancer, the international range narrowed only for patients aged 65 years and older, by 2–6% at 1 year and by 2–3% at 5 years. Interpretation Up-to-date survival trends show increases but persistent differences between countries. Trends in cancer incidence and

Integrating patient reported outcomes with clinical cancer registry data: a feasibility study of the electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) system.

Science.gov (United States)

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

2013-10-25

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. 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. 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. 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 Pplanning and for targeting service provision.

Night work and prostate cancer in men: a Swedish prospective cohort study.

Science.gov (United States)

Åkerstedt, Torbjrn; Narusyte, Jurgita; Svedberg, Pia; Kecklund, Göran; Alexanderson, Kristina

2017-06-08

Prostate cancer is the most common cancer and the second leading cause of cancer-related deaths among men, but the contributing factors are unclear. One such may be night work because of the day/night alternation of work and the resulting disturbance of the circadian system. The purpose of the present study was to investigate the prospective relation between number of years with night work and prostate cancer in men. Cohort study comparing night and day working twins with respect to incident prostate cancer in 12 322 men. Individuals in the Swedish Twin Registry. 12 322 male twins. Prostate cancer diagnoses obtained from the Swedish Cancer Registry with a follow-up time of 12 years, with a total number of cases=454. Multiple Cox proportional hazard regression analysis, adjusted for a number of covariates, showed no association between ever night work and prostate cancer, nor for duration of night work and prostate cancer. Analysis of twin pairs discordant for prostate cancer (n=332) showed no significant association between night work and prostate cancer. The results, together with previous studies, suggest that night work does not seem to constitute a risk factor for prostate cancer. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Global surveillance of cancer survival 1995-2009: analysis of individual data for 25,676,887 patients from 279 population-based registries in 67 countries (CONCORD-2).

Science.gov (United States)

Allemani, Claudia; Weir, Hannah K; Carreira, Helena; Harewood, Rhea; Spika, Devon; Wang, Xiao-Si; Bannon, Finian; Ahn, Jane V; Johnson, Christopher J; Bonaventure, Audrey; Marcos-Gragera, Rafael; Stiller, Charles; Azevedo e Silva, Gulnar; Chen, Wan-Qing; Ogunbiyi, Olufemi J; Rachet, Bernard; Soeberg, Matthew J; You, Hui; Matsuda, Tomohiro; Bielska-Lasota, Magdalena; Storm, Hans; Tucker, Thomas C; Coleman, Michel P

2015-03-14

Worldwide data for cancer survival are scarce. We aimed to initiate worldwide surveillance of cancer survival by central analysis of population-based registry data, as a metric of the effectiveness of health systems, and to inform global policy on cancer control. Individual tumour records were submitted by 279 population-based cancer registries in 67 countries for 25·7 million adults (age 15-99 years) and 75,000 children (age 0-14 years) diagnosed with cancer during 1995-2009 and followed up to Dec 31, 2009, or later. We looked at cancers of the stomach, colon, rectum, liver, lung, breast (women), cervix, ovary, and prostate in adults, and adult and childhood leukaemia. Standardised quality control procedures were applied; errors were corrected by the registry concerned. We estimated 5-year net survival, adjusted for background mortality in every country or region by age (single year), sex, and calendar year, and by race or ethnic origin in some countries. Estimates were age-standardised with the International Cancer Survival Standard weights. 5-year survival from colon, rectal, and breast cancers has increased steadily in most developed countries. For patients diagnosed during 2005-09, survival for colon and rectal cancer reached 60% or more in 22 countries around the world; for breast cancer, 5-year survival rose to 85% or higher in 17 countries worldwide. Liver and lung cancer remain lethal in all nations: for both cancers, 5-year survival is below 20% everywhere in Europe, in the range 15-19% in North America, and as low as 7-9% in Mongolia and Thailand. Striking rises in 5-year survival from prostate cancer have occurred in many countries: survival rose by 10-20% between 1995-99 and 2005-09 in 22 countries in South America, Asia, and Europe, but survival still varies widely around the world, from less than 60% in Bulgaria and Thailand to 95% or more in Brazil, Puerto Rico, and the USA. For cervical cancer, national estimates of 5-year survival range from less

Ovarian cancer at young age: the contribution of mismatch-repair defects in a population-based series of epithelial ovarian

DEFF Research Database (Denmark)

Domanska, K; Malander, S; Måsbäck, A

2007-01-01

age is a hallmark of heredity, and ovarian cancers associated with HNPCC have been demonstrated to develop at a particularly early age. We used the Swedish Cancer Registry to identify a population-based series of 98 invasive epithelial ovarian cancers that developed before 40 years. Mucinous......At least one of ten patients with ovarian cancer is estimated to develop their tumor because of heredity with the breast and ovarian cancer syndrome due to mutations in the BRCA1 and BRCA2 genes and hereditary nonpolyposis colorectal cancer (HNPCC) being the major genetic causes. Cancer at young...... and endometrioid cancers were overrepresented and were diagnosed in 27% and 16% of the tumors, respectively. Immunostaining using antibodies against MLH1, PMS2, MSH2, and MSH6 was used to assess the mismatch-repair status and revealed loss of expression of MLH1/PMS2 in two cases, loss of MSH2/MSH6 in one case...

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

Science.gov (United States)

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

2017-01-01

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

Cancer incidence among merchant seafarers

DEFF Research Database (Denmark)

Ugelvig Petersen, Kajsa; Volk, Julie; Kaerlev, Linda

2018-01-01

on the incidence of specific cancers among both male and female seafarers. Methods: Using records from the Danish Seafarer Registry, all seafarers employed on Danish ships during 1986-1999 were identified, resulting in a cohort of 33 084 men and 11 209 women. Information on vital status and cancer was linked...... to each member of the cohort from the Danish Civil Registration System and the Danish Cancer Registry using the unique Danish personal identification number. SIRs were estimated for specific cancers using national rates. Results: The overall incidence of cancer was increased for both male and female...

Colorectal cancer incidence in 5 Asian countries by subsite: An analysis of Cancer Incidence in Five Continents (1998-2007).

Science.gov (United States)

Park, Hye-Min; Woo, Hyeongtaek; Jung, Sun Jae; Jung, Kyu-Won; Shin, Hai-Rim; Shin, Aesun

2016-12-01

Colorectal cancer is the fourth most common cancer in Asia. However, the trends in colorectal cancer incidence by subsite have not been analyzed across Asian countries. We used the most recent, high quality data from 6 cancer registries for two 5-year periods, 1998-2002 and 2003-2007, from Cancer Incidence in Five Continents to estimate colorectal cancer incidence by subsite in 5 Asian countries. Cases with overlapping lesions or otherwise unspecified colon cancer were re-distributed as proximal or distal colon cancer. Age-standardized incidence rates (ASRs) per 100,000 population and incidence rate ratios from 1998 to 2002 to 2003-2007 were calculated for each subsite. For 2003-2007, men in Miyagi, Japan, had the highest ASR for cancer in the proximal colon, distal colon and rectum. Men of Jewish ancestry in Israel had a high ASR for proximal and distal colon cancer, but the lowest ASR for rectal cancer. The proportion of rectal cancer was highest among Korean men (51.39%) and lowest among Israeli women (26.6%). From 1998-2002 to 2003-2007, rectal cancer incidence did not significantly change in most registries, except for men in Miyagi, Japan, and both sexes in Korea. However, during the same period cancer incidence in the proximal and distal colon increased in most registries. In conclusion, there was substantial variation in subsite distributions of colorectal cancer in Asian registries and increases in overall incidence of colorectal cancer could be attributed to increases in colon cancer. Copyright © 2016 Elsevier Ltd. All rights reserved.

Impact of (18)F-Fluoride PET on Intended Management of Patients with Cancers Other Than Prostate Cancer: Results from the National Oncologic PET Registry.

Science.gov (United States)

Hillner, Bruce E; Siegel, Barry A; Hanna, Lucy; Duan, Fenghai; Shields, Anthony F; Quinn, Bruce; Coleman, R Edward

2014-07-01

The National Oncologic PET Registry prospectively assessed the impact of PET with (18)F-sodium fluoride (NaF PET) on intended management of Medicare patients with suspected or known osseous metastasis. We report our findings for cancers other than prostate and make selected comparisons to our previously reported prostate cancer cohort. Data were collected from both referring and interpreting physicians before and after NaF PET in patients (age ≥ 65 y) stratified for initial staging (IS; n = 570), for suspected first osseous metastasis (FOM; n = 1,814; breast, 781 [43%]; lung, 380 [21%]; and all other cancers, 653 [36%]), and for suspected progression of osseous metastasis (POM; n = 435). The dominant indication was bone pain. If NaF PET were unavailable, conventional bone scintigraphy would have been ordered in 85% of patients. In IS, 28% of patients had suspected or confirmed nonosseous metastasis. If neither conventional bone scintigraphy nor NaF PET were available, referring physicians would have ordered other advanced imaging more than 70% of the time rather than initiate treatment for suspected FOM (11%-16%) or POM (18%-22%). When intended management was classified as either treatment or nontreatment, the intended management change for each cancer type was highest in POM, lower in IS, and lowest in FOM. For suspected FOM, intended management change was lower in breast (24%), lung (36%), or other cancers (31%), compared with prostate cancer (44%) (P definite metastases) frequencies were similar across cancer types. After normal/benign/equivocal PET results, 15% of breast, 30% lung, and 38% prostate cancer patients had treatment, likely reflecting differences in management of nonosseous disease. For patients with definite metastasis on NaF PET, nonprostate, compared with prostate, cancer patients had post-PET plans for more frequent biopsy, alternative imaging, chemotherapy, and radiotherapy. In the smaller IS and POM cohorts, differences among cancer types

Incidence of cancer in children residing in ten jurisdictions of the Mexican Republic: importance of the Cancer registry (a population-based study)

International Nuclear Information System (INIS)

Fajardo-Gutiérrez, Arturo; Juárez-Ocaña, Servando; González-Miranda, Guadalupe; Palma-Padilla, Virginia; Carreón-Cruz, Rogelio; Ortega-Alvárez, Manuel Carlos; Mejía-Arangure, Juan Manuel

2007-01-01

causes of cancer in children. Due to the little that is known about the incidence of cancer in Mexican children, it will be necessary to develop a national program to establish a cancer registry for the whole of the country

[Is cancer incidence different between type 2 diabetes patients compared to non-diabetics in hemodialysis? A study from the REIN registry].

Science.gov (United States)

Le Guillou, Aurélie; Pladys, Adelaide; Kihal, Wahida; Siebert, Muriel; Haddj-Elmrabet, Atman; Cernon, Charlotte; Bernard, Anne; Charasse, Christophe; Mandart, Lise; Hamel, Didier; Tanquerel, Tugdual; Strullu, Bernard; Richer, Christine; Siohan, Pascale; Sawadogo, Théophile; Baleynaud, Juliette; Baluta, Simona; Bayat, Sahar; Vigneau, Cécile

2018-05-01

In France, diabetes mellitus is now the second cause of end stage renal disease. In a large previous French national study, we observed that dialyzed diabetics have a significant lower risk of death by cancer. This first study was focused on cancer death but did not investigate cancer incidence. In this context, the aim of this second study was to compare the incidence of cancer in diabetic dialyzed patients compared to non-diabetic dialyzed patients in a French region. This epidemiologic multicentric study included 588 diabetic and non-diabetic patients starting hemodialysis between 2002 and 2007 in Bretagne. Data were issued from REIN registry and cancer incidence were individually collected from medical records. Diabetics and non-diabetics were matched one by one on age, sex and year of dialysis initiation. During the follow-up, we observed 28 cancers (9.4%) in diabetic patients and 26 cancers (8.9%) in non-diabetics patients. The cumulative incidence to develop a cancer 2 years after the dialysis start was approximately 6% in both diabetics and non-diabetics patients. In univariate Fine and Gray analysis, BMI, hemoglobin, statin use had P-value<0.2. However, in the adjusted model, these variables were not significantly associated with cancer incidence. This study lead on a little number of dialyzed patients did not show any significant difference on cancer incidence between diabetic and non-diabetic patients after hemodialysis start. Copyright © 2017 Société francophone de néphrologie, dialyse et transplantation. Published by Elsevier Masson SAS. All rights reserved.

Breast Density Notification Legislation and Breast Cancer Stage at Diagnosis: Early Evidence from the SEER Registry.

Science.gov (United States)

Richman, Ilana; Asch, Steven M; Bendavid, Eran; Bhattacharya, Jay; Owens, Douglas K

2017-06-01

Twenty-eight states have passed breast density notification laws, which require physicians to inform women of a finding of dense breasts on mammography. To evaluate changes in breast cancer stage at diagnosis after enactment of breast density notification legislation. Using a difference-in-differences analysis, we examined changes in stage at diagnosis among women with breast cancer in Connecticut, the first state to enact legislation, compared to changes among women in control states. We used data from the Surveillance, Epidemiology, and End Results Program (SEER) registry, 2005-2013. Women ages 40-74 with breast cancer. Breast density notification legislation, enacted in Connecticut in October of 2009. Breast cancer stage at diagnosis. Our study included 466,930 women, 25,592 of whom lived in Connecticut. Legislation was associated with a 1.38-percentage-point (95 % CI 0.12 to 2.63) increase in the proportion of women in Connecticut versus control states who had localized invasive cancer at the time of diagnosis, and a 1.12-percentage-point (95 % CI -2.21 to -0.08) decline in the proportion of women with ductal carcinoma in situ at diagnosis. Breast density notification legislation was not associated with a change in the proportion of women in Connecticut versus control states with regional-stage (-0.09 percentage points, 95 % CI -1.01 to 1.02) or metastatic disease (-0.24, 95 % CI -0.75 to 0.28). County-level analyses and analyses limited to women younger than 50 found no statistically significant associations. Single intervention state, limited follow-up, potential confounding from unobserved trends. Breast density notification legislation in Connecticut was associated with a small increase in the proportion of women diagnosed with localized invasive breast cancer in individual-level but not county-level analyses. Whether this finding reflects potentially beneficial early detection or potentially harmful overdiagnosis is not known. Legislation was not

Cytoreductive prostatectomy in metastatic prostate cancer

DEFF Research Database (Denmark)

Becker, Joachim Aidt; Berg, Kasper Drimer; Røder, Martin Andreas

2018-01-01

The impact of cytoreductive radical prostatectomy on oncological outcome in patients with prostate cancer and limited number of bone metastases is unclear. Data from cancer registries, multi-institutional databases and a single institutional case-control study indicate a possible benefit of combi......The impact of cytoreductive radical prostatectomy on oncological outcome in patients with prostate cancer and limited number of bone metastases is unclear. Data from cancer registries, multi-institutional databases and a single institutional case-control study indicate a possible benefit...

Danish Pancreatic Cancer Database

DEFF Research Database (Denmark)

Fristrup, Claus; Detlefsen, Sönke; Palnæs Hansen, Carsten

2016-01-01

: Death is monitored using data from the Danish Civil Registry. This registry monitors the survival status of the Danish population, and the registration is virtually complete. All data in the database are audited by all participating institutions, with respect to baseline characteristics, key indicators......AIM OF DATABASE: The Danish Pancreatic Cancer Database aims to prospectively register the epidemiology, diagnostic workup, diagnosis, treatment, and outcome of patients with pancreatic cancer in Denmark at an institutional and national level. STUDY POPULATION: Since May 1, 2011, all patients...... with microscopically verified ductal adenocarcinoma of the pancreas have been registered in the database. As of June 30, 2014, the total number of patients registered was 2,217. All data are cross-referenced with the Danish Pathology Registry and the Danish Patient Registry to ensure the completeness of registrations...

Review of patient registries in dermatology.

Science.gov (United States)

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

2016-10-01

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

Pilot for the Australian Breast Device Registry (ABDR): a national opt-out clinical quality registry for breast device surgery.

Science.gov (United States)

Hopper, Ingrid; Best, Renee L; McNeil, John J; Mulvany, Catherine M; Moore, Colin C M; Elder, Elisabeth; Pase, Marie; Cooter, Rodney D; Evans, Sue M

2017-12-28

To establish a pilot clinical quality registry (CQR) to monitor the quality of care and device performance for breast device surgery in Australia. All patients having breast device surgery from contributing hospitals in Australia. A literature review was performed which identified quality indicators for breast device surgery. A pilot CQR was established in 2011 to capture prospective data on breast device surgery. An interim Steering Committee and Management Committee were established to provide clinical governance, and guide quality indicator selection. The registry's minimum dataset was formulated in consultation with stakeholder groups; potential quality indicators were assessed in terms of (1) importance and relevance, (2) usability, (3) feasibility to collect and (4) scientific validity. Data collection was by a two-sided paper-based form with manual data entry. Seven sites were recruited, including one public hospital, four private hospitals and two day surgeries. Patients were recruited and opt-out consent used. The pilot breast device registry provides high-quality population-based data. It provides a model for developing a national CQR for breast devices; its minimum dataset and quality indicators reflect the opinions of the broad range of stakeholders. It is easily scalable, and has formed the basis for other international surgical groups establishing similar registries. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Global surveillance of cancer survival 1995–2009: analysis of individual data for 25 676 887 patients from 279 population-based registries in 67 countries (CONCORD-2)

Science.gov (United States)

Allemani, Claudia; Weir, Hannah K; Carreira, Helena; Harewood, Rhea; Spika, Devon; Wang, Xiao-Si; Bannon, Finian; Ahn, Jane V; Johnson, Christopher J; Bonaventure, Audrey; Marcos-Gragera, Rafael; Stiller, Charles; Silva, Gulnar Azevedo e; Chen, Wan-Qing; Ogunbiyi, Olufemi J; Rachet, Bernard; Soeberg, Matthew J; You, Hui; Matsuda, Tomohiro; Bielska-Lasota, Magdalena; Storm, Hans; Tucker, Thomas C; Coleman, Michel P

2015-01-01

Summary Background Worldwide data for cancer survival are scarce. We aimed to initiate worldwide surveillance of cancer survival by central analysis of population-based registry data, as a metric of the effectiveness of health systems, and to inform global policy on cancer control. Methods Individual tumour records were submitted by 279 population-based cancer registries in 67 countries for 25·7 million adults (age 15–99 years) and 75 000 children (age 0–14 years) diagnosed with cancer during 1995–2009 and followed up to Dec 31, 2009, or later. We looked at cancers of the stomach, colon, rectum, liver, lung, breast (women), cervix, ovary, and prostate in adults, and adult and childhood leukaemia. Standardised quality control procedures were applied; errors were corrected by the registry concerned. We estimated 5-year net survival, adjusted for background mortality in every country or region by age (single year), sex, and calendar year, and by race or ethnic origin in some countries. Estimates were age-standardised with the International Cancer Survival Standard weights. Findings 5-year survival from colon, rectal, and breast cancers has increased steadily in most developed countries. For patients diagnosed during 2005–09, survival for colon and rectal cancer reached 60% or more in 22 countries around the world; for breast cancer, 5-year survival rose to 85% or higher in 17 countries worldwide. Liver and lung cancer remain lethal in all nations: for both cancers, 5-year survival is below 20% everywhere in Europe, in the range 15–19% in North America, and as low as 7–9% in Mongolia and Thailand. Striking rises in 5-year survival from prostate cancer have occurred in many countries: survival rose by 10–20% between 1995–99 and 2005–09 in 22 countries in South America, Asia, and Europe, but survival still varies widely around the world, from less than 60% in Bulgaria and Thailand to 95% or more in Brazil, Puerto Rico, and the USA. For cervical cancer

The use of breast conserving surgery: linking insurance claims with tumor registry data

International Nuclear Information System (INIS)

Maskarinec, Gertraud; Dhakal, Sanjaya; Yamashiro, Gladys; Issell, Brian F

2002-01-01

The purpose of this study was to use insurance claims and tumor registry data to examine determinants of breast conserving surgery (BCS) in women with early stage breast cancer. Breast cancer cases registered in the Hawaii Tumor Registry (HTR) from 1995 to 1998 were linked with insurance claims from a local health plan. We identified 722 breast cancer cases with stage I and II disease. Surgical treatment patterns and comorbidities were identified using diagnostic and procedural codes in the claims data. The HTR database provided information on demographics and disease characteristics. We used logistic regression to assess determinants of BCS vs. mastectomy. The linked data set represented 32.8% of all early stage breast cancer cases recorded in the HTR during the study period. Due to the nature of the health plan, 79% of the cases were younger than 65 years. Women with early stage breast cancer living on Oahu were 70% more likely to receive BCS than women living on the outer islands. In the univariate analysis, older age at diagnosis, lower tumor stage, smaller tumor size, and well-differentiated tumor grade were related to receiving BCS. Ethnicity, comorbidity count, menopausal and marital status were not associated with treatment type. In addition to developing solutions that facilitate access to radiation facilities for breast cancer patients residing in remote locations, future qualitative research may help to elucidate how women and oncologists choose between BCS and mastectomy

Clinical statistics of gynecologic cancers in Japan

Science.gov (United States)

Nagase, Satoru

2017-01-01

Cervical, endometrial, and ovarian cancers, have both high morbidity and mortality among the gynecologic malignant tumors in Japan. The present study was conducted using both the population-based cancer registry and the gynecologic cancer registry to elucidate the characteristics of gynecologic malignant tumors in Japan. Based on nationwide estimates from the population-based cancer registry in Japan, the morbidities and mortality of cervical, endometrial, and ovarian cancers were obtained and used for analysis. Clinicopathologic factors for cervical cancer, endometrial cancer, ovarian cancer, including age, clinical stage, postsurgical stage, histological type, therapeutic strategy, and prognosis were retrieved from the gynecologic cancer registry published by the Japan Society of Obstetrics and Gynecology and used for analysis. The morbidities of cervical, endometrial, and ovarian cancers were 10,908, 13,606, and 9,384 women in 2012, respectively. The prevalence of endometrial cancer has significantly and consistently been increasing and represents the most common gynecologic malignant tumor in Japan. The mortalities of cervical, endometrial, and ovarian cancers were 2.1, 1.3, and 3.2 per 100,000 in 2012, respectively. In 2014, 52.2% of cervical cancer patients were classified as stage I, 22.5% as stage II, 10.2% as stage III, and 11.2% as stage IV. In addition, 71.9% of endometrial cancer patients were classified as stage I, 6.0% as stage II, 13.3% as stage III, and 7.5% as stage IV. Finally, 43.2% of ovarian cancer patients were classified as stage I, 9.1% as stage II, 27.6% as stage III, and 7.2% as stage IV. Twelve-point six percent of ovarian cancer patients received neoadjuvant chemotherapy. PMID:28198168

Opioids and breast cancer recurrence

DEFF Research Database (Denmark)

Cronin-Fenton, Deirdre P; Heide-Jørgensen, Uffe; Ahern, Thomas P

2015-01-01

BACKGROUND: Opioids may alter immune function, thereby potentially affecting cancer recurrence. The authors investigated the association between postdiagnosis opioid use and breast cancer recurrence. METHODS: Patients with incident, early stage breast cancer who were diagnosed during 1996 through...... 2008 in Denmark were identified from the Danish Breast Cancer Cooperative Group Registry. Opioid prescriptions were ascertained from the Danish National Prescription Registry. Follow-up began on the date of primary surgery for breast cancer and continued until breast cancer recurrence, death......, emigration, 10 years, or July 31, 2013, whichever occurred first. Cox regression models were used to compute hazard ratios and 95% confidence intervals associating breast cancer recurrence with opioid prescription use overall and by opioid type and strength, immunosuppressive effect, chronic use (≥6 months...

Cancer in atomic bomb survivors

International Nuclear Information System (INIS)

Shigematsu, I.; Kagan, A.

1986-01-01

This book presents information on the following topics: sampling of atomic bomb survivors and method of cancer detection in Hiroshima and Nagasaki; atomic bomb dosimetry for epidemiological studies of survivors in Hiroshima and Nagasaki; tumor and tissue registries in Hiroshima and Nagasaki; the cancer registry in Nagasaki, with atomic bomb survivor data, 1973-1977; cancer mortality; methods for study of delayed health effects of a-bomb radiation; experimental radiation carcinogenesis in rodents; leukemia, multiple myeloma, and malignant lymphoma; cancer of the thyroid and salivary glands; malignant tumors in atomic bomb survivors with special reference to the pathology of stomach and lung cancer; colorectal cancer among atomic bomb survivors; breast cancer in atomic bomb survivors; and ovarian neoplasms in atomic bomb survirors

Bone marrow contributes to epithelial cancers in mice and humans as developmental mimicry.

Science.gov (United States)

Cogle, Christopher R; Theise, Neil D; Fu, Dongtao; Ucar, Deniz; Lee, Sean; Guthrie, Steven M; Lonergan, Jean; Rybka, Witold; Krause, Diane S; Scott, Edward W

2007-08-01

Bone marrow cells have the capacity to contribute to distant organs. We show that marrow also contributes to epithelial neoplasias of the small bowel, colon, and lung, but not the skin. In particular, epithelial neoplasias found in patients after hematopoietic cell transplantations demonstrate that human marrow incorporates into neoplasias by adopting the phenotype of the surrounding neoplastic environment. To more rigorously evaluate marrow contribution to epithelial cancer, we employed mouse models of intestinal and lung neoplasias, which revealed specifically that the hematopoietic stem cell and its progeny incorporate within cancer. Furthermore, this marrow involvement in epithelial cancer does not appear to occur by induction of stable fusion. Whereas previous claims have been made that marrow can serve as a direct source of epithelial neoplasia, our results indicate a more cautionary note, that marrow contributes to cancer as a means of developmental mimicry. Disclosure of Potential Conflicts of Interest is found at the end of this article.

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

Science.gov (United States)

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

2017-08-01

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

The nuclear industry and the risk of cancer in the Manche district - Cancer epidemiology and nuclear industry in the Manche district

International Nuclear Information System (INIS)

Laurent, Michel; Collignon, Albert; Bara, Simona; Degre, Delphine; Mouchel, Dominique; Poncet, Jean-Marc; Troussard, Xavier

2013-12-01

This document proposed a summarized version and a full version of a study on cancer epidemiology in the Manche district in which are located four nuclear sites of different nature and with different potential risks: the Flamanville nuclear plant (with the EPR under construction), the La Hague Areva nuclear fuel processing plant, the Manche storage site, and the Cherbourg arsenal. It describes the missions of the two cancer registries regarding the Manche region population (the general cancer registry for the Manche district, and the specialized registry of hematologic malignancies for the Basse-Normandie region), discusses the post-accidental management of a nuclear accident, presents the levels of the various basic indicators of cancer epidemiology survey (share of cancers in global mortality and factors of risk cancer, radio-induced cancers), compares cancer occurrence in the Manche district and in France and outlines some peculiarities of cancer occurrence in the Manche district, comments the cartography of cancer occurrence in the Manche district over the 1999-2010 period (solid cancers, hematologic malignancies)

[Leather dust and systematic research on occupational tumors: the national and regional registry TUNS].

Science.gov (United States)

Mensi, Carolina; Sieno, Claudia; Consonni, Dario; Riboldi, Luciano

2012-01-01

The sinonasal cancer (SNC) are a rare tumors characterized by high occupational etiologic fraction. For this reason their incidence and etiology can be actively monitored by a dedicated cancer registry. The National Registry of these tumours is situated at the Italian Institute for Occupational Safety and Prevention (ISPESL) and is based on Regional Operating Centres (ROCs). In Lombardy Region the ROC has been established at the end of 2007 with the purpose to make a systematic surveillance and therefore to support in the most suitable way the scientific research and the prevention actions in the high risk working sectors. The aims of this surveillance are: to estimate the regional incidence of SNC, to define different sources of occupational and environmental exposure both known (wood, leather, nickel, chromium) and unknown. The registry collects all the new incident cases of epithelial SNC occurring in residents in Lombardy Region since 01.01.2008. The regional Registry is managed according to National Guidelines. Until January 2010 we received 596 cases of suspected SNC; only 91 (15%) of these were actually incident cases according to the inclusion criteria of the Registry, and they were preferentially adenocarcinoma and squamous carcinoma. In 2008 the regional age-standardized incidence rate of SNC for males and females, respectively, is 0.8 and 0.5 per 100,000. Occupational or environmental exposure to wood or leather dust is ascertained in over the 50% of cases. The occupational exposure to leather dust was duo to work in shoe factories. Our preliminary findings confirm that occupational exposure to wood and leather dusts are the more relevant risk factors for SNC. The study of occupational sectors and job activity in cases without such exposure could suggest new etiologic hypothesis.

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

Science.gov (United States)

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

2018-03-28

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

Risk of second primary cancers after testicular cancer in East and West Germany: A focus on contralateral testicular cancers

Science.gov (United States)

Rusner, Carsten; Streller, Brigitte; Stegmaier, Christa; Trocchi, Pietro; Kuss, Oliver; McGlynn, Katherine A; Trabert, Britton; Stang, Andreas

2014-01-01

Testicular cancer survival rates improved dramatically after cisplatin-based therapy was introduced in the 1970s. However, chemotherapy and radiation therapy are potentially carcinogenic. The purpose of this study was to estimate the risk of developing second primary cancers including the risk associated with primary histologic type (seminoma and non-seminoma) among testicular cancer survivors in Germany. We identified 16 990 and 1401 cases of testicular cancer in population-based cancer registries of East Germany (1961–1989 and 1996–2008) and Saarland (a federal state in West Germany; 1970–2008), respectively. We estimated the risk of a second primary cancer using standardized incidence ratios (SIRs) with 95% confidence intervals (95% CIs). To determine trends, we plotted model-based estimated annual SIRs. In East Germany, a total of 301 second primary cancers of any location were observed between 1961 and 1989 (SIR: 1.9; 95% CI: 1.7–2.1), and 159 cancers (any location) were observed between 1996 and 2008 (SIR: 1.7; 95% CI: 1.4–2.0). The SIRs for contralateral testicular cancer were increased in the registries with a range from 6.0 in Saarland to 13.9 in East Germany. The SIR for seminoma, in particular, was higher in East Germany compared to the other registries. We observed constant trends in the model-based SIRs for contralateral testicular cancers. The majority of reported SIRs of other cancer sites including histology-specific risks showed low precisions of estimated effects, likely due to small sample sizes. Testicular cancer patients are at increased risk especially for cancers of the contralateral testis and should receive intensive follow-ups. PMID:24407180

Uncertain added value of Global Trigger Tool for monitoring of patient safety in cancer care

DEFF Research Database (Denmark)

Lipczak, Henriette; Neckelmann, Kirsten; Steding-Jessen, Marianne

2011-01-01

Monitoring patient safety is a challenging task. The lack of a golden standard has contributed to the recommendation and introduction of several methods. In 2000 the Danish Lung Cancer Registry (DLCR) was established to monitor the clinical management of lung cancer. In 2008 the Global Trigger Tool...... (GTT) was recommended in Denmark as a tool for the monitoring of patient safety. Ideally, the recommendation of a new tool should be preceded by a critical assessment of its added value....

Record linkage for pharmacoepidemiological studies in cancer patients.

Science.gov (United States)

Herk-Sukel, Myrthe P P van; Lemmens, Valery E P P; Poll-Franse, Lonneke V van de; Herings, Ron M C; Coebergh, Jan Willem W

2012-01-01

An increasing need has developed for the post-approval surveillance of (new) anti-cancer drugs by means of pharmacoepidemiology and outcomes research in the area of oncology. To create an overview that makes researchers aware of the available database linkages in Northern America and Europe which facilitate pharmacoepidemiology and outcomes research in cancer patients. In addition to our own database, i.e. the Eindhoven Cancer Registry (ECR) linked to the PHARMO Record Linkage System, we considered database linkages between a population-based cancer registry and an administrative healthcare database that at least contains information on drug use and offers a longitudinal perspective on healthcare utilization. Eligible database linkages were limited to those that had been used in multiple published articles in English language included in Pubmed. The HMO Cancer Research Network (CRN) in the US was excluded from this review, as an overview of the linked databases participating in the CRN is already provided elsewhere. Researchers who had worked with the data resources included in our review were contacted for additional information and verification of the data presented in the overview. The following database linkages were included: the Surveillance, Epidemiology, and End-Results-Medicare; cancer registry data linked to Medicaid; Canadian cancer registries linked to population-based drug databases; the Scottish cancer registry linked to the Tayside drug dispensing data; linked databases in the Nordic Countries of Europe: Norway, Sweden, Finland and Denmark; and the ECR-PHARMO linkage in the Netherlands. Descriptives of the included database linkages comprise population size, generalizability of the population, year of first data availability, contents of the cancer registry, contents of the administrative healthcare database, the possibility to select a cancer-free control cohort, and linkage to other healthcare databases. The linked databases offer a longitudinal

Cancer incidence in south-east Nigeria: a report from Nnewi Cancer ...

African Journals Online (AJOL)

Background: This study is the first population based cancer incidence report from a cancer registry in south-east Nigeria. Objective: To evaluate the incidence of some invasive cancers in southeast Nigeria. Methodology: We collected all new cases of invasive cancers between 1st January and 31st December, 2013.

Converged Registries Solution (CRS)

Data.gov (United States)

Department of Veterans Affairs — The Converged Registries platform is a hardware and software architecture designed to host individual patient registries and eliminate duplicative development effort...

Surveillance of rare cancers

NARCIS (Netherlands)

van der Zwan, Johannes Martinus

2016-01-01

The widespread incidence and effects of cancer have led to a growing development in cancer prevention in the form of screening and research programs and cancer registries. Because of the low number of patients with rare cancers this improvement is not applied to the same extent to all cancer

Review of U.S. registries for psoriasis.

Science.gov (United States)

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

2017-12-01

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

[Cancer incidence and mortality in some health districts in Brescia area 1993--1995].

Science.gov (United States)

Simonati, C; Limina, R M; Gelatti, U; Indelicato, A; Scarcella, C; Donato, F; Nardi, G

2004-01-01

Cancer Registries are an essential part of any rational programme of cancer control, for assessing the impact of cancer in the community, for health care planning and monitoring screening programmes, according to local enviromental problems. The Brescia Cancer Registry started in 1994 producing prevalence, incidence and mortality data using only manual procedures of colletting and processing data from clinical and pathological sources in Brescia in 1993--1995. Data quality indicators such as the percentages of istologically or cytologically verified cases and that of cases registered on the basis of Death Certificate Only (DCO) are similar to those from the other Northern Italian Registries. Incidence rates for all causes and for various common sites are higher in Brescia than in other areas covered by Cancer Registries in North of Italy.

Cancer prevention strategies: use of cancer prevention research registries.

OpenAIRE

Anton-Culver, H

1995-01-01

We present a model to plan a rational strategy for cancer prevention that has two main functions--assessment and intervention. The assessment function includes three main components: to identify populations at high cancer risk, which may be due to their ethnic group, occupational and environmental exposures, family history, cigarette smoking, or other risk factors; to assess exposure to known carcinogens through the general and occupational environments, lifestyle factors, and the home as wel...

Improved survival after rectal cancer in Denmark

DEFF Research Database (Denmark)

Bülow, S; Harling, H; Iversen, L H

2010-01-01

Objective In 1995, an analysis showed an inferior prognosis after rectal cancer in Denmark compared with the other Scandinavian countries. The Danish Colorectal Cancer Group (DCCG) was established with the aim of improving the prognosis, and in this study we present a survival analysis of patients...... treated from 1994 to 2006. Method The study was based on the National Rectal Cancer Registry and the National Colorectal Cancer Database, supplemented with data from the Central Population Registry. The analysis included actuarial overall and relative survival. Results A total of 10 632 patients were...

Internal Mammary Lymph Node Irradiation Contributes to Heart Dose in Breast Cancer

International Nuclear Information System (INIS)

Chargari, Cyrus; Castadot, Pierre; MacDermed, Dhara; Vandekerkhove, Christophe; Bourgois, Nicolas; Van Houtte, Paul; Magne, Nicolas

2010-01-01

We assessed the impact of internal mammary chain radiotherapy (IMC RT) to the radiation dose received by the heart in terms of heart dose-volume histogram (DVH). Thirty-six consecutive breast cancer patients presenting with indications for IMC RT were enrolled in a prospective study. The IMC was treated by a standard conformal RT technique (50 Gy). For each patient, a cardiac DVH was generated by taking into account the sole contribution of IMC RT. Cardiac HDV were compared according to breast cancer laterality and the type of previous surgical procedure, simple mastectomy or breast conservative therapy (BCT). The contribution of IMC RT to the heart dose was significantly greater for patients with left-sided versus right-sided tumors (13.8% and 12.8% for left-sided tumors versus 3.9% and 4.2% for right-sided tumors in the BCT group and the mastectomy group, respectively; p < 0.0001). There was no statistically significant difference in IMC contribution depending on the initial surgical procedure. IMC RT contributes to cardiac dose for both left-sided and right-sided breast cancers, although the relative contribution is greater in patients with left-sided tumors.

Completeness and underestimation of cancer mortality rate in Iran: a report from Fars Province in southern Iran.

Science.gov (United States)

Marzban, Maryam; Haghdoost, Ali-Akbar; Dortaj, Eshagh; Bahrampour, Abbas; Zendehdel, Kazem

2015-03-01

The incidence and mortality rates of cancer are increasing worldwide, particularly in the developing countries. Valid data are needed for measuring the cancer burden and making appropriate decisions toward cancer control. We evaluated the completeness of death registry with regard to cancer death in Fars Province, I. R. of Iran. We used data from three sources in Fars Province, including the national death registry (source 1), the follow-up data from the pathology-based cancer registry (source 2) and hospital based records (source 3) during 2004 - 2006. We used the capture-recapture method and estimated underestimation and the true age standardized mortality rate (ASMR) for cancer. We used log-linear (LL) modeling for statistical analysis. We observed 1941, 480, and 355 cancer deaths in sources 1, 2 and 3, respectively. After data linkage, we estimated that mortality registry had about 40% underestimation for cancer death. After adjustment for this underestimation rate, the ASMR of cancer in the Fars Province for all cancer types increased from 44.8 per 100,000 (95% CI: 42.8 - 46.7) to 76.3 per 100,000 (95% CI: 73.3 - 78.9), accounting for 3309 (95% CI: 3151 - 3293) cancer deaths annually. The mortality rate of cancer is considerably higher than the rates reported by the routine registry in Iran. Improvement in the validity and completeness of the mortality registry is needed to estimate the true mortality rate caused by cancer in Iran.

Thyroid cancer and multiple primary tumors in the SEER cancer registries

NARCIS (Netherlands)

Ronckers, Cécile M.; McCarron, Peter; Ron, Elaine

2005-01-01

Thyroid cancer incidence rates have increased steadily in the United States and elsewhere. Radiation exposure at a young age is a strong risk factor, but otherwise the etiology is unclear. To explore etiologic clues, we studied the risk of thyroid cancer after an earlier primary cancer, as well as

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

Science.gov (United States)

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

2017-07-01

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

Cancer rehabilitation indicators for Europe

DEFF Research Database (Denmark)

Baili, Paolo; Hoekstra-Weebers, Josette; Van Hoof, Elke

2013-01-01

, but to obtain comparable data across European countries it will be necessary to administer a questionnaire to randomly selected samples of patients from population-based cancer registry databases. However, three factors complicate questionnaire studies: patients may not be aware that they have cancer......Little is known of cancer rehabilitation needs in Europe. EUROCHIP-3 organised a group of experts to propose a list of population-based indicators used for describing cancer rehabilitation across Europe. The aim of this study is to present and discuss these indicators. A EUROCHIP-3 expert panel...... reached agreement on two types of indicators. (a) Cancer prevalence indicators. These were proposed as a means of characterising the burden of cancer rehabilitation needs by time from diagnosis and patient health status. These indicators can be estimated from cancer registry data or by collecting data...

Cancer incidence in Spain, 2015.

Science.gov (United States)

Galceran, J; Ameijide, A; Carulla, M; Mateos, A; Quirós, J R; Rojas, D; Alemán, A; Torrella, A; Chico, M; Vicente, M; Díaz, J M; Larrañaga, N; Marcos-Gragera, R; Sánchez, M J; Perucha, J; Franch, P; Navarro, C; Ardanaz, E; Bigorra, J; Rodrigo, P; Bonet, R Peris

2017-07-01

Periodic cancer incidence estimates of Spain from all existing population-based cancer registries at any given time are required. The objective of this study was to present the current situation of cancer incidence in Spain. The Spanish Network of Cancer Registries (REDECAN) estimated the numbers of new cancer cases occurred in Spain in 2015 by applying the incidence-mortality ratios method. In the calculus, incidence data from population-based cancer registries and mortality data of all Spain were used. In 2015, nearly a quarter of a million new invasive cancer cases were diagnosed in Spain, almost 149,000 in men (60.0%) and 99,000 in women. Globally, the five most common cancers were those of colon-rectum, prostate, lung, breast and urinary bladder. By gender, the four most common cancers in men were those of prostate (22.4%), colon-rectum (16.6%), lung (15.1%) and urinary bladder (11.7%). In women, the most common ones were those of breast (28.0%), colon-rectum (16.9%), corpus uteri (6.2%) and lung (6.0%). In recent years, cancer incidence in men seems to have stabilized due to the fact that the decrease in tobacco-related cancers compensates for the increase in other types of cancer like those of colon and prostate. In women, despite the stabilization of breast cancer incidence, increased incidence is due, above all, to the rise of colorectal and tobacco-related cancers. To reduce these incident cancer cases, improvement of smoking control policies and extension of colorectal cancer screening should be the two priorities in cancer prevention for the next years.

[Report of Cancer Incidence and Mortality in China, 2014].

Science.gov (United States)

Chen, W Q; Li, H; Sun, K X; Zheng, R S; Zhang, S W; Zeng, H M; Zou, X N; Gu, X Y; He, J

2018-01-23

Objective: The registration data of local cancer registries in 2014 were collected by National Central Cancer Registry (NCCR)in 2017 to estimate the cancer incidence and mortality in China. Methods: The data submitted from 449 registries were checked and evaluated, and the data of 339 registries out of them were qualified and selected for the final analysis. Cancer incidence and mortality were stratified by area, gender, age group and cancer type, and combined with the population data of 2014 to estimate cancer incidence and mortality in China. The age composition of standard population of Chinese census in 2000 and Segi's population were used for age-standardized incidence and mortality in China and worldwide, respectively. Results: Total covered population of 339 cancer registries (129 in urban and 210 in rural) in 2014 were 288 243 347 (144 061 915 in urban and 144 181 432 in rural areas). The mortality verified cases (MV%) were 68.01%. Among them, 2.19% cases were identified through death certifications only (DCO%), and the mortality to incidence ratio was 0.61. There were about 3, 804, 000 new cases diagnosed as malignant cancer and 2, 296, 000 cases dead in 2014 in the whole country. The incidence rate was 278.07/100, 000 (males 301.67/100, 000, females 253.29/100, 000) in China, age-standardized incidence rates by Chinese standard population (ASIRC) and by world standard population were 190.63/100, 000 and 186.53/100, 000, respectively, and the cumulative incidence rate (0-74 age years old) was 21.58%. The cancer incidence and ASIRC in urban areas were 302.13/100, 000 and 196.58/100, 000, respectively, whereas in rural areas, those were 248.94/100, 000 and 182.64/100, 000, respectively. The cancer mortality in China was 167.89/100, 000 (207.24/100, 000 in males and 126.54/100, 000 in females), age-standardized mortality rates by Chinese standard population (ASMRC) and by world standard population were 106.98/100, 000 and 106.09/100, 000, respectively. And

Trends in the incidence of nonmelanoma skin cancer in Denmark 1978-2007: Rapid incidence increase among young Danish women

DEFF Research Database (Denmark)

Birch-Johansen, Fatima; Jensen, Allan; Mortensen, Lone

2010-01-01

Nonmelanoma skin cancer (NMSC) is the most common cancer among Caucasian populations worldwide, and incidence rates are increasing. However, NMSC data are not routinely collected by cancer registries, but Denmark has extensive registration of NMSC in two nationwide population-based registries. We...... assessed incidence trends of NMSC in Denmark from 1978 to 2007. Data for basal cell carcinoma (BCC) and squamous cell carcinoma (SCC) were obtained from the Danish Cancer Registry and the Danish Registry of Pathology. For both genders, age-specific incidence rates and overall incidence rates, age...

The EuroMyositis registry

DEFF Research Database (Denmark)

Lilleker, James B; Vencovsky, Jiri; Wang, Guochun

2018-01-01

AIMS: The EuroMyositis Registry facilitates collaboration across the idiopathic inflammatory myopathy (IIM) research community. This inaugural report examines pooled Registry data. METHODS: Cross-sectional analysis of IIM cases from 11 countries was performed. Associations between clinical subtyp...

Rural Women's Perceptions About Cancer Disparities and Contributing Factors: a Call to Communication.

Science.gov (United States)

Molina, Yamile; Zimmermann, Kristine; Carnahan, Leslie R; Paulsey, Ellen; Bigman, Cabral A; Khare, Manorama M; Zahnd, Whitney; Jenkins, Wiley D

2017-02-27

Rural cancer disparities are increasingly documented in the USA. Research has identified and begun to address rural residents' cancer knowledge and behaviors, especially among women. Little, however, is known about rural female residents' awareness of cancer inequities and perceived contributing factors affecting them and their families. The purpose of this study was to address these gaps in the literature via a secondary analysis of qualitative needs assessment in Illinois' rural southernmost seven counties, a geographic region with relatively high rates of cancer incidence, morbidity, and mortality. A convenience sample of 202 rural adult female residents was recruited and participated in 26 focus groups, with 3-13 women per group. Inductive content analysis, guided by the principle of constant comparison, was used to analyze the qualitative data. Most respondents indicated their awareness of disproportionate cancer burden in their communities. Individual-level behaviors and environmental toxins were identified as contributing factors. Interestingly, however, environmental toxins were more often discussed as factors contributing to geographic differences, whereas individual-level behaviors were noted as important for overall cancer prevention and control. This study provides important insight into female rural residents' perspectives and offers novel venues for educational programs and research in the context of communication to eliminate disparities.

Danish Hip Arthroscopy Registry

DEFF Research Database (Denmark)

Mygind-Klavsen, Bjarne; Grønbech Nielsen, Torsten; Maagaard, Niels

2016-01-01

Danish Hip Arthroscopy Registry (DHAR) was initiated in 2012 as a web-based prospective registry. The purpose of this study was to evaluate and report the epidemiologic and perioperative data of the first 2000 procedures in a Danish hip arthroscopy population and to describe the development of DHAR...... was 0.65 and HAGOS sub-scores were 51 (pain), 49 (symptoms), 53 (ADL), 35 (sport), 20 (physical activity) and 29, respectively. We conclude that patients undergoing hip arthroscopy report considerable pain, loss of function, reduced level of activity and reduced quality-of-life prior to surgery....... The problems with development and maintaining a large clinical registry are described and further studies are needed to validate data completeness. We consider the development of a national clinical registry for hip arthroscopy as a successful way of developing and maintaining a valuable clinical...

Cancer incidence and mortality in China, 2013.

Science.gov (United States)

Chen, Wanqing; Zheng, Rongshou; Zhang, Siwei; Zeng, Hongmei; Xia, Changfa; Zuo, Tingting; Yang, Zhixun; Zou, Xiaonong; He, Jie

2017-08-10

National Central Cancer Registry of China (NCCRC) updated nationwide statistics of cancer incidence and mortality in China using population-based cancer registration data in 2013 from all available cancer registries. In 2016, 255 registries' data were qualified and included in this analysis. We estimated numbers of new cancer cases and deaths in China in 2013 using age-specific rates and corresponding national population stratified by area, sex, age group (0, 1-4, 5-9, 10-14…85+) and cancer type. The world Segi's population was applied for age-standardized rates. All rates were expressed per 100,000 person-year. A total of 3,682,000 new cancer cases and 2,229,300 cancer deaths were estimated in China in 2013. Cancers of lung, female breast, stomach, liver, colon-rectum and esophagus were the most common cancers, accounting for about half of all cancer new cases. Lung cancer, liver cancer, stomach cancer, esophageal cancer, colorectal cancer were the five leading causes of cancer death, accounting for about 60% of all cancer deaths. The cancer patterns showed differences not only between male and female, but also among different geographic regions in China. For overall cancers, the age-standardized incidence rates were stable during the past decades in male, but significantly increased by 2.2% per year in female. Cancer poses a major threat to public health and the cancer burden keep raising in China. The annual updated cancer statistics can provide scientific basis for cancer prevention and control. Copyright © 2017. Published by Elsevier B.V.

Iranian Joint Registry(Iranian National Hip and Knee Arthroplasty Registry

Directory of Open Access Journals (Sweden)

Hamidreza Aslani

2016-04-01

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

Using the National Death Index to Identify Duplicate Cancer Incident Cases in Florida and New York, 1996–2005

Science.gov (United States)

Wohler, Brad; Qiao, Baozhen; MacKinnon, Jill A.; Schymura, Maria J.

2014-01-01

Introduction Cancer registries link incidence data to state death certificates to update vital status and identify missing cases; they also link these data to the National Death Index (NDI) to update vital status among patients who leave the state after their diagnosis. This study explored the use of information from NDI linkages to identify potential duplicate cancer cases registered in both Florida and New York. Methods The Florida Cancer Data System (FCDS) and the New York State Cancer Registry (NYSCR) linked incidence data with state and NDI death records from 1996 through 2005. Information for patients whose death occurred in the reciprocal state (the death state) was exchanged. Potential duplicate cases were those that had the same diagnosis and the same or similar diagnosis date. Results NDI identified 4,657 FCDS cancer patients who died in New York and 2,740 NYSCR cancer patients who died in Florida. Matching identified 5,030 cases registered in both states; 508 were death certificate-only (DCO) cases in the death state’s registry, and 3,760 (74.8%) were potential duplicates. Among FCDS and NYSCR patients who died and were registered in the registry of the reciprocal state, more than 50% were registered with the same cancer diagnosis, and approximately 80% had similar diagnosis dates (within 1 year). Conclusion NDI identified DCO cases in the death state’s cancer registry and a large proportion of potential duplicate cases. Standards are needed for assigning primary residence when multiple registries report the same case. The registry initiating the NDI linkage should consider sharing relevant information with death state registries so that these registries can remove erroneous DCO cases from their databases. PMID:25254985

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

Science.gov (United States)

Mathis-Edenhofer, Stefan; Piso, Brigitte

2011-12-01

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

Immunization registries in the EMR Era

Science.gov (United States)

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

2013-01-01

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

The incidence rate of female breast cancer in Saudi Arabia: an observational descriptive epidemiological analysis of data from Saudi Cancer Registry 2001–2008

Directory of Open Access Journals (Sweden)

Alghamdi IG

2013-10-01

Full Text Available Ibrahim G Alghamdi,1 Issam I Hussain,1 Mohamed S Alghamdi,2 Mohamed A El-Sheemy1,3 1University of Lincoln, Brayford Pool, Lincoln, United Kingdom; 2Ministry of Health, General Directorate of Health Affairs Al-Baha, Kingdom of Saudi Arabia; 3Lincoln Hospital, Research and Development, United Lincolnshire Hospitals, National Health Service Trust, Lincoln, United Kingdom Background: This study presents descriptive epidemiological data related to breast cancer cases diagnosed from 2001 to 2008 among Saudi women, including the frequency and percentage of cases, the crude incidence rate (CIR, and the age-standardized incidence rate (ASIR, adjusted by the region and year of diagnosis. Methods: This is a retrospective descriptive epidemiological study of all Saudi female breast cancer cases from 2001 to 2008. The statistical analyses were conducted using descriptive statistics, a linear regression model, and analysis of variance with the Statistical Package for the Social Sciences version 20 (IBM Corporation, Armonk, NY, USA. Results: A total of 6,922 female breast cancer cases were recorded in the Saudi Cancer Registry from 2001 to 2008. The highest overall percentages (38.6% and 31.2% of female breast cancer cases were documented in women who were 30–44 and 45–59 years of age, respectively. The eastern region of Saudi Arabia had the highest overall ASIR, at 26.6 per 100,000 women, followed by Riyadh at 20.5 and Makkah at 19.4. Jazan, Baha, and Asir had the lowest average ASIRs, at 4.8, 6.1, and 7.3 per 100,000 women, respectively. The region of Jouf (24.2%; CIR 11.2, ASIR 17.2 had the highest changes in CIR and ASIR from 2001 to 2008. While Qassim, Jazan and Tabuk recorded down-trending rates with negative values. Conclusion: There was a significant increase in the CIRs and ASIRs for female breast cancer between 2001 and 2008. The majority of breast cancer cases occurred among younger women. The region of Jouf had the greatest significant

Prostate Cancer Stem-like Cells Contribute to the Development of Castration-Resistant Prostate Cancer

Directory of Open Access Journals (Sweden)

Diane Ojo

2015-11-01

Full Text Available Androgen deprivation therapy (ADT has been the standard care for patients with advanced prostate cancer (PC since the 1940s. Although ADT shows clear benefits for many patients, castration-resistant prostate cancer (CRPC inevitably occurs. In fact, with the two recent FDA-approved second-generation anti-androgens abiraterone and enzalutamide, resistance develops rapidly in patients with CRPC, despite their initial effectiveness. The lack of effective therapeutic solutions towards CRPC largely reflects our limited understanding of the underlying mechanisms responsible for CRPC development. While persistent androgen receptor (AR signaling under castration levels of serum testosterone (<50 ng/mL contributes to resistance to ADT, it is also clear that CRPC evolves via complex mechanisms. Nevertheless, the physiological impact of individual mechanisms and whether these mechanisms function in a cohesive manner in promoting CRPC are elusive. In spite of these uncertainties, emerging evidence supports a critical role of prostate cancer stem-like cells (PCSLCs in stimulating CRPC evolution and resistance to abiraterone and enzalutamide. In this review, we will discuss the recent evidence supporting the involvement of PCSLC in CRPC acquisition as well as the pathways and factors contributing to PCSLC expansion in response to ADT.

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

NARCIS (Netherlands)

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

The National Academy of Sciences-National Research Council Twin Registry (NAS-NRC Twin Registry) is a comprehensive registry of White male twin pairs born in the USA between 1917 and 1927, both of the twins having served in the military. The purpose was medical research and ultimately improved

A Registry Framework Enabling Patient-Centred Care.

Science.gov (United States)

Bellgard, Matthew I; Napier, Kathryn; Render, Lee; Radochonski, Maciej; Lamont, Leanne; Graham, Caroline; Wilton, Steve D; Fletcher, Sue; Goldblatt, Jack; Hunter, Adam A; Weeramanthri, Tarun

2015-01-01

Clinical decisions rely on expert knowledge that draws on quality patient phenotypic and physiological data. In this regard, systems that can support patient-centric care are essential. Patient registries are a key component of patient-centre care and can come in many forms such as disease-specific, recruitment, clinical, contact, post market and surveillance. There are, however, a number of significant challenges to overcome in order to maximise the utility of these information management systems to facilitate improved patient-centred care. Registries need to be harmonised regionally, nationally and internationally. However, the majority are implemented as standalone systems without consideration for data standards or system interoperability. Hence the task of harmonisation can become daunting. Fortunately, there are strategies to address this. In this paper, a disease registry framework is outlined that enables efficient deployment of national and international registries that can be modified dynamically as registry requirements evolve. This framework provides a basis for the development and implementation of data standards and enables patients to seamlessly belong to multiple registries. Other significant advances include the ability for registry curators to create and manage registries themselves without the need to contract software developers, and the concept of a registry description language for ease of registry template sharing.

A Nation-Wide Cancer Registry-Based Study of Adenosquamous Carcinoma in Taiwan.

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Yuan-Tzu Lan

Full Text Available Adenosquamous carcinoma (ASC is a rare disease involving various organs, yet there are no large-scale population-based comparative studies on ASC among different organs.The incidence and overall survival of ASC among various organs in cases diagnosed in Taiwan from January 1, 2003 to December 31, 2010 were calculated and compared using data from the Taiwan Cancer Registry (TCR. The various organs were classified and divided into three different systems: the female reproductive, respiratory, and alimentary systems. Survival analysis were also compared among 30,850 patients diagnosed as ASC, adenocarcinoma (AC or squamous cell carcinoma (SCC in organs with frequent ASC.During the study period, a total of 576 ASC cases were diagnosed in Taiwan. The most common primary system was respiratory (73.8%, followed by alimentary (16.2% and female reproductive (10%. The overall survival were significantly higher for cases involving the female reproductive system, followed by the respiratory and alimentary systems (P = 0.016. The median overall survival were worse in males than females for cases involving the respiratory system (22.4 vs. 31.8 months, P = 0.044. Multivariate analysis showed that age ≧ 65, more advanced T and N categories were independent unfavorable prognostic factors of overall survival in ASC. ASC histology is an independent unfavorable prognostic factor compared with AC and SCC.ASC at an old age and more advanced T and N categories were found to be associated with a poor prognosis.

A Nation-Wide Cancer Registry-Based Study of Adenosquamous Carcinoma in Taiwan

Science.gov (United States)

Lan, Yuan-Tzu; Huang, Kuo-Hung; Liu, Chien-An; Tai, Ling-Chen; Chen, Ming-Huang; Chao, Yee; Li, Anna Fen-Yau; Chiou, Shih-Hwa; Shyr, Yi-Ming; Wu, Chew-Wun; Fang, Wen-Liang

2015-01-01

Background Adenosqamous carcinoma (ASC) is a rare disease involving various organs, yet there are no large-scale population-based comparative studies on ASC among different organs. Methods The incidence and overall survival of ASC among various organs in cases diagnosed in Taiwan from January 1, 2003 to December 31, 2010 were calculated and compared using data from the Taiwan Cancer Registry (TCR). The various organs were classified and divided into three different systems: the female reproductive, respiratory, and alimentary systems. Survival analysis were also compared among 30,850 patients diagnosed as ASC, adenocarcinoma (AC) or squamous cell carcinoma (SCC) in organs with frequent ASC. Results During the study period, a total of 576 ASC cases were diagnosed in Taiwan. The most common primary system was respiratory (73.8%), followed by alimentary (16.2%) and female reproductive (10%). The overall survival were significantly higher for cases involving the female reproductive system, followed by the respiratory and alimentary systems (P = 0.016). The median overall survival were worse in males than females for cases involving the respiratory system (22.4 vs. 31.8 months, P = 0.044). Multivariate analysis showed that age≧65, more advanced T and N categories were independent unfavorable prognostic factors of overall survival in ASC. ASC histology is an independent unfavorable prognostic factor compared with AC and SCC. Conclusions ASC at an old age and more advanced T and N categories were found to be associated with a poor prognosis. PMID:26445240

Time trends in axilla management among early breast cancer patients

DEFF Research Database (Denmark)

Gondos, Adam; Jansen, Lina; Heil, Joerg

2016-01-01

Background We examined time trends in axilla management among patients with early breast cancer in European clinical settings. Material and methods EUROCANPlatform partners, including population-based and cancer center-specific registries, provided routinely available clinical cancer registry data...... for a comparative study of axillary management trends among patients with first non-metastatic breast cancer who were not selected for neoadjuvant therapy during the last decade. We used an additional short questionnaire to compare clinical care patterns in 2014. Results Patients treated in cancer centers were...... younger than population-based registry populations. Tumor size and lymph node status distributions varied little between settings or over time. In 2003, sentinel lymph node biopsy (SLNB) use varied between 26% and 81% for pT1 tumors, and between 2% and 68% for pT2 tumors. By 2010, SLNB use increased to 79...

Registries in European post-marketing surveillance

DEFF Research Database (Denmark)

Bouvy, Jacoline C; Blake, Kevin; Slattery, Jim

2017-01-01

at gaining further insight into the European Medicines Agency's (EMA) requests for new registries and registry studies using existing registries and to review the experience gained in their conduct. METHODS: European Public Assessment Reports were consulted to identify products for which a request...

Contextualized B2B Registries

OpenAIRE

Radetzki, U; Boniface, M.J.; Surridge, M.

2007-01-01

Abstract. Service discovery is a fundamental concept underpinning the move towards dynamic service-oriented business partnerships. The business process for integrating service discovery and underlying registry technologies into busi-ness relationships, procurement and project management functions has not been examined and hence existing Web Service registries lack capabilities required by business today. In this paper we present a novel contextualized B2B registry that supports dynamic regist...

Validation of the CancerMath prognostic tool for breast cancer in Southeast Asia

NARCIS (Netherlands)

Miao, Hui; Hartman, Mikael; Verkooijen, Helena M; Taib, Nur Aishah; Wong, Hoong-Seam; Subramaniam, Shridevi; Yip, Cheng-Har; Tan, Ern-Yu; Chan, Patrick; Lee, Soo-Chin; Bhoo-Pathy, Nirmala

2016-01-01

BACKGROUND: CancerMath is a set of web-based prognostic tools which predict nodal status and survival up to 15 years after diagnosis of breast cancer. This study validated its performance in a Southeast Asian setting. METHODS: Using Singapore Malaysia Hospital-Based Breast Cancer Registry, clinical

Cancer risk in fathers and brothers of testicular cancer patients in Denmark. A population-based study.

Science.gov (United States)

Westergaard, T; Olsen, J H; Frisch, M; Kroman, N; Nielsen, J W; Melbye, M

1996-05-29

There are several reports of familial testicular cancer in the literature but few systematic attempts have been made to estimate the risk of testicular cancer in first-degree relatives of patients with this neoplasm, and the risk remains to be fully assessed in population-based studies. By means of data from the Danish Cancer Registry, we identified all testicular cancer patients (index cases) born and diagnosed during 1950-1993 in Denmark. Their fathers were identified from national registries, as were the brothers of a subcohort of these patients. Familial cancer occurrence was determined through linkage with the cancer registry and compared with the cancer incidence in the general male population in Denmark. The ratio of observed to expected cancers generated the measure used for the relative risk. Fathers of 2,113 index cases with testicular cancer experienced an almost 2-fold risk of developing testicular cancer themselves (RR = 1.96; 95% CI: 1.01-3.43). Overall, the fathers had a decreased relative cancer risk (RR = 0.84; 95% CI: 0.74-0.95) with a significantly decreased risk of cancers of the lung and digestive organs. Brothers of a subcohort of 702 index cases showed a markedly increased risk of testicular cancer (RR = 12.3; 95% CI: 3.3-3 1.5). In conclusion, we documented a significantly increased familial risk of testicular cancer which was relatively more pronounced between brothers than between fathers and sons. These findings support the possible involvement of a genetic component in the aetiology of testicular cancer, but also leave room for a hypothesized influence of in-utero exposures, such as specific maternal hormone levels, that might be shared by brothers.

Cancer as a complex phenotype: pattern of cancer distribution within and beyond the nuclear family.

Directory of Open Access Journals (Sweden)

Laufey T Amundadottir

2004-12-01

Full Text Available BACKGROUND: The contribution of low-penetrant susceptibility variants to cancer is not clear. With the aim of searching for genetic factors that contribute to cancer at one or more sites in the body, we have analyzed familial aggregation of cancer in extended families based on all cancer cases diagnosed in Iceland over almost half a century. METHODS AND FINDINGS: We have estimated risk ratios (RRs of cancer for first- and up to fifth-degree relatives both within and between all types of cancers diagnosed in Iceland from 1955 to 2002 by linking patient information from the Icelandic Cancer Registry to an extensive genealogical database, containing all living Icelanders and most of their ancestors since the settlement of Iceland. We evaluated the significance of the familial clustering for each relationship separately, all relationships combined (first- to fifth-degree relatives and for close (first- and second-degree and distant (third- to fifth-degree relatives. Most cancer sites demonstrate a significantly increased RR for the same cancer, beyond the nuclear family. Significantly increased familial clustering between different cancer sites is also documented in both close and distant relatives. Some of these associations have been suggested previously but others not. CONCLUSION: We conclude that genetic factors are involved in the etiology of many cancers and that these factors are in some cases shared by different cancer sites. However, a significantly increased RR conferred upon mates of patients with cancer at some sites indicates that shared environment or nonrandom mating for certain risk factors also play a role in the familial clustering of cancer. Our results indicate that cancer is a complex, often non-site-specific disease for which increased risk extends beyond the nuclear family.

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

Directory of Open Access Journals (Sweden)

Kátia Regina da Silva

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

[The Murcia Twin Registry. A resource for research on health-related behaviour].

Science.gov (United States)

Ordoñana, Juan R; Sánchez Romera, Juan F; Colodro-Conde, Lucía; Carrillo, Eduvigis; González-Javier, Francisca; Madrid-Valero, Juan J; Morosoli-García, José J; Pérez-Riquelme, Francisco; Martínez-Selva, José M

Genetically informative designs and, in particular, twin studies, are the most widely used methodology to analyse the relative contribution of genetic and environmental factors to inter-individual variability. These studies basically compare the degree of phenotypical similarity between monozygotic and dizygotic twin pairs. In addition to the traditional estimate of heritability, this kind of registry enables a wide variety of analyses which are unique due to the characteristics of the sample. The Murcia Twin Registry is population-based and focused on the analysis of health-related behaviour. The observed prevalence of health problems is comparable to that of other regional and national reference samples, which guarantees its representativeness. Overall, the characteristics of the Registry facilitate developing various types of research as well as genetically informative designs, and collaboration with different initiatives and consortia. Copyright © 2016 SESPAS. Publicado por Elsevier España, S.L.U. All rights reserved.

Current situation and challenge of registry in China.

Science.gov (United States)

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

2014-09-01

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

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

Science.gov (United States)

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

2009-01-01

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

Meat intake, cooking methods, dietary carcinogens, and colorectal cancer risk: findings from the Colorectal Cancer Family Registry

International Nuclear Information System (INIS)

Joshi, Amit D; Kim, Andre; Lewinger, Juan Pablo; Ulrich, Cornelia M; Potter, John D; Cotterchio, Michelle; Le Marchand, Loic; Stern, Mariana C

2015-01-01

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

[Trauma registry and injury].

Science.gov (United States)

Shapira, S C

2001-10-01

The trauma registry network constitutes an essential database in every injury prevention system. In order to rationally estimate the extent of injury in general, and injuries from traffic accidents in particular, the trauma registry systems should contain the most comprehensive and broad database possible, in line with the operational definitions. Ideally, the base of the injury pyramid should also include mild injuries and even "near-misses". The Israeli National Trauma Registry has come a long way in the last few years. The eventual inclusion of all trauma centers in Israel will enable the establishment of a firm base for the allocation of resources by decision-makers.

The Qingdao Twin Registry

DEFF Research Database (Denmark)

Duan, Haiping; Ning, Feng; Zhang, Dongfeng

2013-01-01

In 1998, the Qingdao Twin Registry was initiated as the main part of the Chinese National Twin Registry. By 2005, a total of 10,655 twin pairs had been recruited. Since then new twin cohorts have been sampled, with one longitudinal cohort of adolescent twins selected to explore determinants of me...

Are data from national quality registries used in quality improvement at Swedish hospital clinics?

Science.gov (United States)

Fredriksson, Mio; Halford, Christina; Eldh, Ann Catrine; Dahlström, Tobias; Vengberg, Sofie; Wallin, Lars; Winblad, Ulrika

2017-11-01

To investigate the use of data from national quality registries (NQRs) in local quality improvement as well as purported key factors for effective clinical use in Sweden. Comparative descriptive: a web survey of all Swedish hospitals participating in three NQRs with different levels of development (certification level). Heads of the clinics and physician(s) at clinics participating in the Swedish Stroke Register (Riksstroke), the Swedish National Registry of Gallstone Surgery and Endoscopic Retrograde Cholangiopancreatography (GallRiks) and the Swedish Lung Cancer Registry (NLCR). Individual and unit level use of NQRs in local quality improvement, and perceptions on data quality, organizational conditions and user motivation. Riksstroke data were reported as most extensively used at individual and unit levels (x̅ 17.97 of 24 and x̅ 27.06 of 35). Data quality and usefulness was considered high for the two most developed NQRs (x̅ 19.86 for Riksstroke and x̅ 19.89 for GallRiks of 25). Organizational conditions were estimated at the same level for Riksstroke and GallRiks (x̅ 12.90 and x̅ 13.28 of 20) while the least developed registry, the NLCR, had lower estimates (x̅ 10.32). In Riksstroke, the managers requested registry data more often (x̅ 15.17 of 20). While there were significant differences between registries in key factors such as management interest, use of NQR data in local quality improvement seems rather prevalent, at least for Riksstroke. The link between the registry's level of development and factors important for routinization of innovations such as NQRs needs investigation. © The Author 2017. Published by Oxford University Press in association with the International Society for Quality in Health Care. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

Estimating environmental and occupational contribution to cancer in Sudan

International Nuclear Information System (INIS)

Abdallah, Y. M. Y.; Beden, S. J.; Khalifa, A. A.

2012-12-01

This study was performed in Radiation and Isotopes Center of Khartoum (RICK) and National Cancer Institute (NCI) University of Gazeria. It focused on cancer patients who were treated by radiation therapy in the period between 2008 and 2009. The study investigator the risk and causative factors and geographical distribution over the sudan states and the relationship of incidence with some patient's customs and dietary habits. This study summarizes recent scientific evidence of environmental and occupational links to nearly 30 types of cancer. the discussion of each cancer type is introduced by highlights of trends in incidence. The study considers additional indication that involuntary exposures are linked to cancers, such as patterns observed in different geographic areas and among different population patterns of cancer in children. The purpose of this study is to review scientific evidence, particular y epidemiologic evidence. regarding the contribution of environmental and occupational exposures to the overall cancer incidence in the Sudan. The study discussed that the widespread exposures from air and water pollution, the work environment, exposure resulting form personal habits such as smoking and drinking and the diet are major contributors to cancer in human. In the past three decades, there have been several efforts to estimate the proportion of caner due to these involuntary exposure, starting with an ambitious effort by different scientists. This study provided and alternative interpretation of the evidence of cancer incidence to particular factors. We conclude the study by recommending the significance of giving environmental and occupational links to cancer serious consideration by individuals and institutions concerned with cancer prevention, particularly those involved in research and education. (Author)

Estimating the effect of current, previous and never use of drugs in studies based on prescription registries

DEFF Research Database (Denmark)

Nielsen, Lars Hougaard; Løkkegaard, Ellen; Andreasen, Anne Helms

2009-01-01

of this misclassification for analysing the risk of breast cancer. MATERIALS AND METHODS: Prescription data were obtained from Danish Registry of Medicinal Products Statistics and we applied various methods to approximate treatment episodes. We analysed the duration of HT episodes to study the ability to identify......PURPOSE: Many studies which investigate the effect of drugs categorize the exposure variable into never, current, and previous use of the study drug. When prescription registries are used to make this categorization, the exposure variable possibly gets misclassified since the registries do...... not carry any information on the time of discontinuation of treatment.In this study, we investigated the amount of misclassification of exposure (never, current, previous use) to hormone therapy (HT) when the exposure variable was based on prescription data. Furthermore, we evaluated the significance...

The value of trauma registries.

Science.gov (United States)

Moore, Lynne; Clark, David E

2008-06-01

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

On Domain Registries and Website Content

DEFF Research Database (Denmark)

Schwemer, Sebastian Felix

2018-01-01

such as Internet access service providers, hosting platforms, and websites that link to content. This article shows that in recent years, however, that the (secondary) liability of domain registries and registrars, and more specifically country code top-level domain registries (ccTLDs) for website content, has...... been tested in several EU Member States. The article investigates tendencies in the national lower-court jurisprudence and explores to what extent the liability exemption regime of the E-Commerce Directive applies to domain registries. The analysis concludes that whereas domain registries fall under...

Cancer Health Disparities Research: Where have we been and where should we go?

Science.gov (United States)

Scarlett Lin Gomez, PhD, MPH, is Professor in the Department of Epidemiology and Biostatistics and a member of the Helen Diller Family Comprehensive Cancer Center at the University of California, San Francisco. She is also Director of the Greater Bay Area Cancer Registry, a part of the California Cancer Registry and the NCI Surveillance Epidemiology End Results (SEER) Program. Her research focuses primarily on cancer health disparities and aims to understand the multilevel drivers of those disparities. She has contributed surveillance data regarding cancer incidence and outcome patterns and trends for distinct Asian American, Native Hawaiian, and Pacific Islander and Hispanic ethnic groups, as well as cancer patterns by nativity status and neighborhood characteristics. She developed the California Neighborhoods Data System, a compilation of small-area level data on social and built environment characteristics, and has used these data in more than a dozen funded studies to evaluate the impact of social and built neighborhood environment factors on disease outcomes. Since 1996, Dr. Lin Gomez has received many honors and awards, including being named Author of the Year in 2010 by the American Journal of Public Health, the Above and Beyond Excellence Award in 2012 and the Mentoring Award in 2014, both by the Cancer Prevention Institute of California. She completed her education in epidemiology with an MPH at the University of Michigan, Ann Arbor, and her PhD at Stanford.

Contralateral breast cancer: incidence according to ductal or lobular phenotype of the primary

International Nuclear Information System (INIS)

Langlands, F.; White, J.; Kearins, O.; Cheung, S.; Burns, R.; Horgan, K.; Sharma, N.; Dodwell, D.

2016-01-01

Aim: To identify differences in the incidence of contralateral breast cancer between patients with a primary tumour diagnosis of invasive ductal carcinoma (IDC) and those with a diagnosis of invasive lobular carcinoma (ILC). Materials and methods: Data from two large cancer registries (registry A & B) the Northern and Yorkshire Cancer Registry Information Service (NYCRIS) and the West Midlands Cancer Intelligence Unit (WMCIU) from 1998–2003 for all cases of invasive breast cancer of either pure ductal or pure lobular reported histology were obtained. The invasive status of the contralateral tumour diagnosis and tumour morphology was collected. Chi-square tests were undertaken to examine the differences in contralateral rates for both registries and univariate analysis to ascertain which predictors affected contralateral breast cancer risk for registry A the WMCIU cases. Results: A total of 38,132 patients were studied, 32,735 patients with IDC and 5397 (14.2%) patients with ILC over the 6-year period. There was no significant difference between the occurrence and time to occurrence of contralateral breast cancer according to original cancer histology, 901 (2.8%) patients with IDC versus 166 (3.1%) patients with ILC (p=0.169). The analysis of registry A cases showed no association between original histology (ductal versus lobular), age at diagnosis, tumour grade, use of radiotherapy for the primary cancer or use of systemic therapy (chemotherapy and/or endocrine therapy), and development of a contralateral breast cancer. Conclusion: There is no apparent increase in risk of developing a contralateral breast cancer according to the primary cancer histology either IDC or ILC. Standard mammographic follow-up does not need to take account of original tumour pathology. Increased intervention or post-treatment surveillance for the contralateral breast is not indicated in the context of ILC. The role of MRI should be restricted to those patients with ILC who are planning

The Three Mile Island Population Registry.

Science.gov (United States)

Goldhaber, M K; Tokuhata, G K; Digon, E; Caldwell, G G; Stein, G F; Lutz, G; Gur, D

1983-01-01

Shortly after the March 28, 1979, accident at the Three Mile Island (TMI) nuclear plant outside Harrisburg, Pa., the Pennsylvania Department of Health, in conjunction with the Centers for Disease Control and the U.S. Bureau of the Census, conducted a census of the 35,930 persons residing within 5 miles of the plant. With the help of 150 enumerators, demographic and health-related information was collected on each person to provide baseline data for future short- and long-term epidemiologic studies of the effects of the accident. Individual radiation doses were estimated on the basis of residential location and the amount of time each person spent in the 5-mile area during the 10 days after the accident. Health and behavioral resurveys of the population will be conducted approximately every 5 years. Population-mobility, morbidity, and mortality will be studied yearly by matching the TMI Population Registry with postal records, cancer registry records, and death certificate data. Because the radiation dose from TMI was extremely small, any increase in morbidity or mortality attributable to the accident would be so small as not to be measurable by present methods; however, adverse health effects as a result of psychological stress may occur. Also, a temporary increase in reporting of disease could occur because of increased surveillance and attention to health.

Estimation of National Colorectal-Cancer Incidence Using Claims Databases

International Nuclear Information System (INIS)

Quantin, C.; Benzenine, E.; Hagi, M.; Auverlot, B.; Cottenet, J.; Binquet, M.; Compain, D.

2012-01-01

The aim of the study was to assess the accuracy of the colorectal-cancer incidence estimated from administrative data. Methods. We selected potential incident colorectal-cancer cases in 2004-2005 French administrative data, using two alternative algorithms. The first was based only on diagnostic and procedure codes, whereas the second considered the past history of the patient. Results of both methods were assessed against two corresponding local cancer registries, acting as “gold standards.” We then constructed a multivariable regression model to estimate the corrected total number of incident colorectal-cancer cases from the whole national administrative database. Results. The first algorithm provided an estimated local incidence very close to that given by the regional registries (646 versus 645 incident cases) and had good sensitivity and positive predictive values (about 75% for both). The second algorithm overestimated the incidence by about 50% and had a poor positive predictive value of about 60%. The estimation of national incidence obtained by the first algorithm differed from that observed in 14 registries by only 2.34%. Conclusion. This study shows the usefulness of administrative databases for countries with no national cancer registry and suggests a method for correcting the estimates provided by these data.

Lauren subtypes of advanced gastric cancer influence survival and response to chemotherapy: real-world data from the AGAMENON National Cancer Registry.

Science.gov (United States)

Jiménez Fonseca, Paula; Carmona-Bayonas, Alberto; Hernández, Raquel; Custodio, Ana; Cano, Juana Maria; Lacalle, Alejandra; Echavarria, Isabel; Macias, Ismael; Mangas, Monserrat; Visa, Laura; Buxo, Elvira; Álvarez Manceñido, Felipe; Viudez, Antonio; Pericay, Carles; Azkarate, Aitor; Ramchandani, Avinash; López, Carlos; Martinez de Castro, Eva; Fernández Montes, Ana; Longo, Federico; Sánchez Bayona, Rodrigo; Limón, Maria Luisa; Diaz-Serrano, Asun; Martin Carnicero, Alfonso; Arias, David; Cerdà, Paula; Rivera, Fernando; Vieitez, Jose Maria; Sánchez Cánovas, Manuel; Garrido, M; Gallego, J

2017-09-05

The choice of chemotherapy in HER2-negative gastric cancer is based on centre's preferences and adverse effects profile. No schedule is currently accepted as standard, nor are there any factors to predict response, other than HER2 status. We seek to evaluate whether Lauren type influences the efficacy of various chemotherapies and on patient overall survival (OS). We have conducted a multicenter study in 31 hospitals. The eligibility criteria include diagnosis of stomach or gastroesophageal junction adenocarcinoma, HER2 negativity, and chemotherapy containing 2-3 drugs. Cox proportional hazards regression adjusted for confounding factors, with tests of 'treatment-by-histology' interaction, was used to estimate treatment effect. Our registry contains 1303 tumours analysable for OS end points and 730 evaluable for overall response rate (ORR). A decrease in ORR was detected in the presence of a diffuse component: odds ratio 0.719 (95% confidence interval (CI), 0.525-0.987), P=0.039. Anthracycline- or docetaxel-containing schedules increased ORR only in the intestinal type. The diffuse type displayed increased mortality with hazard ratio (HR) of 1.201 (95% CI, 1.054-1.368), P=0.0056. Patients receiving chemotherapy with docetaxel exhibited increased OS limited to the intestinal type: HR 0.65 (95% CI, 0.49-0.87), P=0.024, with no increment in OS for the subset having a diffuse component. With respect to progression-free survival (PFS), a significant interaction was seen in the effect of docetaxel-containing schedules, with better PFS limited to the intestinal type subgroup, in the comparison against any other schedule: HR 0.65 (95% CI, 0.50-0.85), P=0.015, and against anthracycline-based regimens: HR 0.64 (95% CI, 0.46-0.88), P=0.046. As a conclusion, in this registry, Lauren classification tumour subtypes predicted survival and responded differently to chemotherapy. Future clinical trials should stratify effect estimations based on histology.

The German cervical cancer screening model: development and validation of a decision-analytic model for cervical cancer screening in Germany.

Science.gov (United States)

Siebert, Uwe; Sroczynski, Gaby; Hillemanns, Peter; Engel, Jutta; Stabenow, Roland; Stegmaier, Christa; Voigt, Kerstin; Gibis, Bernhard; Hölzel, Dieter; Goldie, Sue J

2006-04-01

We sought to develop and validate a decision-analytic model for the natural history of cervical cancer for the German health care context and to apply it to cervical cancer screening. We developed a Markov model for the natural history of cervical cancer and cervical cancer screening in the German health care context. The model reflects current German practice standards for screening, diagnostic follow-up and treatment regarding cervical cancer and its precursors. Data for disease progression and cervical cancer survival were obtained from the literature and German cancer registries. Accuracy of Papanicolaou (Pap) testing was based on meta-analyses. We performed internal and external model validation using observed epidemiological data for unscreened women from different German cancer registries. The model predicts life expectancy, incidence of detected cervical cancer cases, lifetime cervical cancer risks and mortality. The model predicted a lifetime cervical cancer risk of 3.0% and a lifetime cervical cancer mortality of 1.0%, with a peak cancer incidence of 84/100,000 at age 51 years. These results were similar to observed data from German cancer registries, German literature data and results from other international models. Based on our model, annual Pap screening could prevent 98.7% of diagnosed cancer cases and 99.6% of deaths due to cervical cancer in women completely adherent to screening and compliant to treatment. Extending the screening interval from 1 year to 2, 3 or 5 years resulted in reduced screening effectiveness. This model provides a tool for evaluating the long-term effectiveness of different cervical cancer screening tests and strategies.

How Interdisciplinary Teamwork Contributes to Psychosocial Cancer Support.

Science.gov (United States)

Daem, Michiel; Verbrugghe, Mathieu; Schrauwen, Wim; Leroux, Silvian; Van Hecke, Ann; Grypdonck, Maria

2018-03-30

The organization of psychosocial care is rather complex, and its provision diverse. Access is affected by the acceptance and attitude of patients and professional caregivers toward psychosocial care. The aims of this study were to examine when patients with cancer experience quality psychosocial care and to identify circumstances in collaboration that contribute to patient-perceived positive psychosocial care. This study used a qualitative design in which semistructured interviews were conducted with patients, hospital workers, and primary health professionals. Psychosocial care is often requested but also refused by patients with cancer. Based on this discrepancy, a distinction is made between psychosocial support and psychosocial interventions. Psychosocial support aims to reduce the chaos in patients' lives caused by cancer and is not shunned by patients. Psychosocial interventions comprise the formal care offered in response to psychosocial problems. Numerous patients are reluctant to use psychosocial interventions, which are often provided by psychologists. Psychosocial care aims to assist patients in bearing the difficulties of cancer and its treatment. Patients prefer informal support, given often in conjunction with physical care. This study confirms the important role of nurses in promoting psychosocial care. Patients perceive much support from nurses, although nurses are not considered to be professional psychosocial caregivers. Being perceived as approachable and trustworthy offers nurses a significant opportunity to bring more intense psychosocial interventions within reach of cancer patients.

EMI Registry Development Plan

CERN Document Server

Memon, S.; Szigeti, G.; Field, L.

2012-01-01

This documents describes the overall development plan of the EMI Registry product, the plan focuses on the realisation of the EMI Registry specification as defined in the document. It is understood that during the course of the development phase the specification will likely evolve and the changes will be fed into the specification document.

Registry Evaluation of Digital Ulcers in Systemic Sclerosis

Directory of Open Access Journals (Sweden)

Felice Galluccio

2010-01-01

Full Text Available Digital ulcers are a very frequent complication of systemic sclerosis affecting about half of the SSc patients, and about 75% of the affected patients have their first DU episode within 5 years from their first non-Raynaud symptom. The lack of adequate classification criteria as well as the lack of knowledge of the development of DU have contributed to the opening of specific registries to better understand the natural history of these lesions. For these reason, specific disease registries play a fundamental role in this field of research. Thanks to the systematic collection of data and their subsequent analysis and comparison between different cohorts, it is possible to improve understanding of the underlying trigger mechanisms of DU development and to determine temporal trends. In the future, the development of recommendations for the management of DU remains of pivotal importance to prevent DU development and obtain rapid healing as well as reduction of pain and disability.

Type 2 diabetes mellitus is associated with increased risk of pancreatic cancer: A veteran administration registry study

OpenAIRE

Makhoul, Issam; Yacoub, Abdulraheem; Siegel, Eric

2016-01-01

Background: The etiology of pancreatic cancer remains elusive. Several studies have suggested a role for diabetes mellitus, but the magnitude of its contribution remains controversial. Objectives: Utilizing a large administrative database, this retrospective cohort study was designed to investigate the relationship between type 2 diabetes mellitus and pancreatic cancer. Patients and design: Using the Veterans Integrated Services Network 16 database, 322,614 subjects were enrolled in the study...

Dietary fat, body weight, and cancer: contributions of studies in rodents to understanding these cancer risk factors in humans.

Science.gov (United States)

Rogers, A E; Sullivan, L M; Hafer, L J

1999-12-01

Understanding diet and energy balance as risk factors for breast, colon, and other cancers requires information on the contribution of each factor and of interactions among factors to cancer risk. Rodent models for breast cancer provide extensive data on effects of dietary fat and calories, energy balance, body weight gain, and physical activity on tumor development. Analyses of the combined data from many studies have shown clearly that quality and quantity of dietary fat and energy balance contribute independently to increased mammary gland tumorigenesis. These findings were seen in female rats fed diets high in fat (35-40% of calories) compared to rats fed control diets, with approximately 10% of calories as fat (Fay and Freedman, 1997, Breast Cancer Res. Treat. 46, 215-223). The methods used permit comparison of experimental and epidemiological data, and they may be useful in extrapolating between species and developing public health recommendations. In addition to the contributions of lifetime-diet composition, intake, energy balance, and physical activity to cancer risk, there are questions about the timing and duration of alterations in these factors and about the "dose-response" characteristics of cancer risk to the factors. Endocrine mechanisms may be significant in mammary gland tumor risk, but experimental and epidemiological data indicate that cancers at other sites, such as colon and liver, also are influenced by the factors listed. Other diet and lifestyle factors that influence energy, or specifically fat, metabolism may also affect risk for cancers that are promoted by increased intake of fat and calories. Studies of separate and interactive effects of dietary fat, black tea, weight gain, and mammary gland tumorigenesis (Rogers, et al, 1998, Carcinogenesis 19, 1269-1273) have been analyzed. Using adjustment of carcinogenesis endpoints for body weight, tumor burden, and latency, they were found to be related to weight gain within treatment groups in

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

Science.gov (United States)

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

2014-06-07

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

Defining incidental perineural invasion: the need for a national registry.

Science.gov (United States)

Buchanan, Lauren; De'Ambrosis, Brian; DeAmbrosis, Kathryn; Warren, Timothy; Huilgol, Shyamala; Soyer, H Peter; Panizza, Benedict

2014-05-01

This article by the Perineural Invasion (PNI) Registry Group aims to clarify clinical and histopathological ambiguities surrounding PNI in non-melanoma skin cancer (NMSC). PNI is reportedly present in approximately 2-6% of cases of NMSC and is associated with greater rates of morbidity and mortality. The distinction between clinical PNI and incidental PNI is somewhat unclear, especially in regard to management and prognosis. One important objective of the PNI Registry is to develop a standardised method of classifying perineural invasion. Hence, in this article we propose a definition for PNI and for its sub-classification. This article also provides a critical analysis of the current literature on the treatment of incidental PNI by evaluating the key cohort studies that have investigated the use of surgery or radiotherapy in the management of incidental PNI. At present, there are no universal clinical guidelines that specify the acceptable treatment of NMSC exhibiting incidental PNI. Consequently, patients often receive surgery with varying wider margins, or radiotherapy despite the limited evidence substantiating such management options. It is evident from the existing literature that current opinion is divided over the benefit of adjuvant radiotherapy. Certain prognostic factors have been proposed, such as the size and depth of tumour invasion, nerve diameter, the presence of multifocal PNI and the type of tumour. The PNI Registry is a web-based registry that has been developed to assist in attaining further data pertaining to incidental PNI in NMSC. It is envisaged that this information will provide the foundation for identifying and defining best practice in managing incidental PNI. © 2013 The Australasian College of Dermatologists.

The Long-term financial consequences of breast cancer

DEFF Research Database (Denmark)

Jensen, L.; Overgaard, C.; Bøggild, H.

2017-01-01

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....... 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 with logistic regression models. Analyses were stratified according...

Active surveillance for low-risk prostate cancer in Austria: the online registry of the Qualitätspartnerschaft Urologie (QuapU).

Science.gov (United States)

Eredics, Klaus; Dorfinger, Karl; Kramer, Gero; Ponholzer, Anton; Madersbacher, Stephan

2017-06-01

Active surveillance (AS) is a well-recognized strategy to reduce the risk of overtreatment in men with low-risk prostate cancer. No data on this approach are available from Austria. The Qualitätspartnerschaft Urologie (QuapU) developed an online database for patients managed with AS in Austria. Principal inclusion/exclusion criteria corresponded to those of the S3 prostate cancer guideline of German urologists: prostate-specific antigen (PSA) 4-10 ng/ml: 85%). The prostate volume averaged 39 ml. The mean time under AS was 17.5 months (12 months: 40%). The AS adherence at 12 months was 85% and at 24 months 76%. To date, a total of 23 patients (17.6%) stopped AS. The most frequent reasons for discontinuing AS were patient wish for active treatment (43.5%) and PSA progression (30.4%). A histological progression was rarely seen (6.1%) and the control biopsy rate was low (19.8%). This study is the first description of AS in Austria and documents the feasibility of an online registry for AS. The data confirm the international experience with this approach with acceptable adherence rates.

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

Science.gov (United States)

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

2013-01-01

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

Severe Caloric Restriction in Adolescence and Incidence of Breast Cancer

National Research Council Canada - National Science Library

Michels, Karin B; Ekbom, Anders

2004-01-01

...; use of the Swedish Inpatient Registry and the Swedish Cancer Registry Subjects 7303 women who were treated for anorexia nervosa requiring hospitalization between 1965 and 1998 Main Outcome Measure...

Estimating the incidence of breast cancer in Africa: a systematic review and meta-analysis

Science.gov (United States)

Adeloye, Davies; Sowunmi, Olaperi Y.; Jacobs, Wura; David, Rotimi A; Adeosun, Adeyemi A; Amuta, Ann O.; Misra, Sanjay; Gadanya, Muktar; Auta, Asa; Harhay, Michael O; Chan, Kit Yee

2018-01-01

Background Breast cancer is estimated to be the most common cancer worldwide. We sought to assemble publicly available data from Africa to provide estimates of the incidence of breast cancer on the continent. Methods A systematic search of Medline, EMBASE, Global Health and African Journals Online (AJOL) was conducted. We included population- or hospital-based registry studies on breast cancer conducted in Africa, and providing estimates of the crude incidence of breast cancer among women. A random effects meta-analysis was employed to determine the pooled incidence of breast cancer across studies. Results The literature search returned 4648 records, with 41 studies conducted across 54 study sites in 22 African countries selected. We observed important variations in reported cancer incidence between population- and hospital-based cancer registries. The overall pooled crude incidence of breast cancer from population-based registries was 24.5 per 100 000 person years (95% confidence interval (CI) 20.1-28.9). The incidence in North Africa was higher at 29.3 per 100 000 (95% CI 20.0-38.7) than Sub-Saharan Africa (SSA) at 22.4 per 100 000 (95% CI 17.2-28.0). In hospital-based registries, the overall pooled crude incidence rate was estimated at 23.6 per 100 000 (95% CI 18.5-28.7). SSA and Northern Africa had relatively comparable rates at 24.0 per 100 000 (95% CI 17.5-30.4) and 23.2 per 100 000 (95% CI 6.6-39.7), respectively. Across both registries, incidence rates increased considerably between 2000 and 2015. Conclusions The available evidence suggests a growing incidence of breast cancer in Africa. The representativeness of these estimates is uncertain due to the paucity of data in several countries and calendar years, as well as inconsistency in data collation and quality across existing cancer registries. PMID:29740502

Contributing to Tumor Molecular Characterization Projects with a Global Impact | Office of Cancer Genomics

Science.gov (United States)

My name is Nicholas Griner and I am the Scientific Program Manager for the Cancer Genome Characterization Initiative (CGCI) in the Office of Cancer Genomics (OCG). Until recently, I spent most of my scientific career working in a cancer research laboratory. In my postdoctoral training, my research focused on identifying novel pathways that contribute to both prostate and breast cancers and studying proteins within these pathways that may be targeted with cancer drugs.

Epidemiology of breast cancer in Indian women.

Science.gov (United States)

Malvia, Shreshtha; Bagadi, Sarangadhara Appalaraju; Dubey, Uma S; Saxena, Sunita

2017-08-01

Breast cancer has ranked number one cancer among Indian females with age adjusted rate as high as 25.8 per 100,000 women and mortality 12.7 per 100,000 women. Data reports from various latest national cancer registries were compared for incidence, mortality rates. The age adjusted incidence rate of carcinoma of the breast was found as high as 41 per 100,000 women for Delhi, followed by Chennai (37.9), Bangalore (34.4) and Thiruvananthapuram District (33.7). A statistically significant increase in age adjusted rate over time (1982-2014) in all the PBCRs namely Bangalore (annual percentage change: 2.84%), Barshi (1.87%), Bhopal (2.00%), Chennai (2.44%), Delhi (1.44%) and Mumbai (1.42%) was observed. Mortality-to-incidence ratio was found to be as high as 66 in rural registries whereas as low as 8 in urban registries. Besides this young age has been found as a major risk factor for breast cancer in Indian women. Breast cancer projection for India during time periods 2020 suggests the number to go as high as 1797900. Better health awareness and availability of breast cancer screening programmes and treatment facilities would cause a favorable and positive clinical picture in the country. © 2017 John Wiley & Sons Australia, Ltd.

Poor Prognosis of Lower Inner Quadrant in Lymph Node-negative Breast Cancer Patients Who Received No Chemotherapy: A Study Based on Nationwide Korean Breast Cancer Registry Database.

Science.gov (United States)

Hwang, Ki-Tae; Kim, Jongjin; Kim, Eun-Kyu; Jung, Sung Hoo; Sohn, Guiyun; Kim, Seung Il; Jeong, Joon; Lee, Hyouk Jin; Park, Jin Hyun; Oh, Sohee

2017-07-01

We aimed to investigate the prognostic influence of primary tumor site on the survival of patients with breast cancer. Data of 63,388 patients with primary breast cancer from the Korean Breast Cancer Registry were analyzed. Primary tumor sites were classified into 5 groups: upper outer quadrant, lower outer quadrant, upper inner quadrant, lower inner quadrant (LIQ), and central portion. We analyzed overall survival (OS) and breast cancer-specific survival (BCSS) according to primary tumor site. Central portion and LIQ showed lower survival rates regarding both OS and BCSS compared with the other 3 quadrants (all P < .05) and hazard ratios were 1.267 (95% CI, 1.180-1.360, P < .001) and 1.215 (95% CI, 1.097-1.345, P < .001), respectively. Although central portion showed more unfavorable clinicopathologic features, LIQ showed more favorable features than the other 3 quadrants. Primary tumor site was a significant factor in univariate and multivariate analyses for OS and BCSS (all P < .001). For lymph node-negative patients, LIQ showed a worse OS than the other primary tumor sites in the subgroup with no chemotherapy (P < .001), but that effect disappeared in the subgroup with chemotherapy (P = .058). LIQ showed a worse prognosis despite having more favorable clinicopathologic features than other tumor locations and it was more prominent for lymph node-negative patients who received no chemotherapy. The hypothesis of possible hidden internal mammary node metastasis could be suggested to play a key role in LIQ lesions. Copyright © 2017 Elsevier Inc. All rights reserved.

Domestic Radon and Childhood Cancer in Denmark

DEFF Research Database (Denmark)

Raaschou-Nielsen, Ole; Andersen, Claus Erik; Andersen, Helle P.

2008-01-01

: We identified 2400 incident cases of leukemia, central nervous system tumor, and malignant lymphoma diagnosed in children between 1968 and 1994 in the Danish Cancer Registry. Control children (n = 6697) were selected from the Danish Central Population Registry. Radon levels in residences of children...

A Dutch Nationwide Bariatric Quality Registry: DATO.

Science.gov (United States)

Poelemeijer, Youri Q M; Liem, Ronald S L; Nienhuijs, Simon W

2017-12-22

In the Netherlands, the number of bariatric procedures increased exponentially in the 90s. To ensure and improve the quality of bariatric surgery, the nationwide Dutch Audit for Treatment of Obesity (DATO) was established in 2014. The audit was coordinated by the Dutch Institute for Clinical Auditing (DICA). This article provides a review of the aforementioned process in establishing a nationwide registry in the Netherlands. In collaboration with the DATO's scientific committee and other stakeholders, an annual list of several external quality indicators was formulated. This list consists of volume, process, and outcome indicators. In addition to the annual external indicators, the database permits individual hospitals to analyze their own data. The dashboard provides several standardized reports and detailed quality indicators, which are updated on a weekly base. Since the start, all 18 Dutch bariatric centers participated in the nationwide audit. A total of 21,941 cases were registered between 2015 and 2016. By 2016, the required variables were registered in 94.3% of all cases. A severe complicated course was seen in 2.87%, and mortality in 0.05% in 2016. The first-year follow-up shows a > 20% TWL in 86.1% of the registered cases. The DATO has become rapidly a mature registry. The well-organized structure of the national audit institution DICA and governmental funding were essential. However, most important were the bariatric teams themselves. The authors believe reporting the results from the registry has already contributed to more knowledge and acceptance by other health care providers.

Considerations for Pharmacoepidemiological Studies of Drug-Cancer Associations

DEFF Research Database (Denmark)

Pottegård, Anton; Friis, Søren; Stürmer, Til

2018-01-01

and future perspectives. Aspects of data sources include assessment of complete history of drug use and data on dose and duration of drug use, allowing estimates of cumulative exposure. Outcome data from formal cancer registries are preferable, but cancer data from other sources, for example, patient......In this MiniReview, we provide general considerations for the planning and conduct of pharmacoepidemiological studies of associations between drug use and cancer development. We address data sources, study design, assessment of drug exposure, ascertainment of cancer outcomes, confounder adjustment...... or pathology registries, medical records or claims are also suitable. The two principal designs for observational studies evaluating drug-cancer associations are the cohort and case-control designs. A key challenge in studies of drug-cancer associations is the exposure assessment due to the typically long...

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

Science.gov (United States)

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

2017-06-01

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

Clinical disease registries in acute myocardial infarction.

Science.gov (United States)

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

2014-06-26

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

Where the Semantic Web and Web 2.0 Meet Format Risk Management: P2 Registry

Directory of Open Access Journals (Sweden)

David Tarrant

2011-03-01

Full Text Available The Web is increasingly becoming a platform for linked data. This means making connections and adding value to data on the Web. As more data becomes openly available and more people are able to use the data, it becomes more powerful. An example is file format registries and the evaluation of format risks. Here the requirement for information is now greater than the effort that any single institution can put into gathering and collating this information. Recognising that more is better, the creators of PRONOM, JHOVE, GDFR and others are joining to lead a new initiative: the Unified Digital Format Registry. Ahead of this effort, a new RDF-based framework for structuring and facilitating file format data from multiple sources, including PRONOM, has demonstrated it is able to produce more links, and thus provide more answers to digital preservation questions - about format risks, applications, viewers and transformations - than the native data alone. This paper will describe this registry, P2, and its services, show how it can be used, and provide examples where it delivers more answers than the contributing resources. The P2 Registry is a reference platform to allow and encourage publication of preservation data, and also an examplar of what can be achieved if more data is published openly online as simple machine-readable documents. This approach calls for the active participation of the digital preservation community to contribute data by simply publishing it openly on the Web as linked data.

Comprehensive Analysis of the Incidence and Survival Patterns of Lung Cancer by Histologies, Including Rare Subtypes, in the Era of Molecular Medicine and Targeted Therapy: A Nation-Wide Cancer Registry-Based Study From Taiwan.

Science.gov (United States)

Chang, Jeffrey S; Chen, Li-Tzong; Shan, Yan-Shen; Lin, Sheng-Fung; Hsiao, Sheng-Yen; Tsai, Chia-Rung; Yu, Shu-Jung; Tsai, Hui-Jen

2015-06-01

Lung cancer is the third most common cancer in the world and has the highest cancer mortality rate. A worldwide increasing trend of lung adenocarcinoma has been noted. In addition, the identification of epidermal growth factor receptor (EGFR) mutations and the introduction of EGFR inhibitors to successfully treat EGFR mutated non-small cell lung cancers are breakthroughs for lung cancer treatment. The current study evaluated the incidence and survival of lung cancer using data collected by the Taiwan Cancer Registry between 1996 and 2008. The results showed that the most common histologic subtype of lung cancer was adenocarcinoma, followed by squamous cell carcinoma, small cell carcinoma, large cell carcinoma, neuroendocrine tumors, lymphoma, and sarcoma. Overall, the incidence of lung cancer in Taiwan increased significantly from 1996 to 2008. An increased incidence was observed for adenocarcinoma, particularly for women, with an annual percentage change of 5.9, whereas the incidence of squamous cell carcinoma decreased. Among the subtypes of lung cancer, the most rapid increase occurred in neuroendocrine tumors with an annual percentage change of 15.5. From 1996-1999 to 2005-2008, the 1-year survival of adenocarcinoma increased by 10% for men, whereas the 1-, 3-, and 5-year survivals of adenocarcinoma for women increased by 18%, 11%, and 5%, respectively. Overall, the incidence of lung cancer has been increasing in Taiwan, although the trends were variable by subtype. The introduction of targeted therapies was associated with a significantly improved survival for lung adenocarcinoma in Taiwan; however, more studies are needed to explain the rising incidence of lung adenocarcinoma. In addition, it is important to investigate the molecular pathogenesis of the various subtypes of lung cancer to develop novel therapeutic agents.

Danish Hip Arthroscopy Registry (DHAR)

DEFF Research Database (Denmark)

Lund, Bent; Mygind-Klavsen, Bjarne; Grønbech Nielsen, Torsten

2017-01-01

The Danish Hip Arthroscopy Registry (DHAR) was initiated in January 2012 as a web-based prospective registry. The purpose of this study was to evaluate and report the first registry based outcome data of a national population with radiological and clinical femoroacetabular impingement (FAI......) data from DHAR between January 2012 and November 2015 were extracted. Radiological pincer-type FAI was defined as LCE > 35° and cam FAI as alpha-angle > 55°. These data were combined with FAI surgical data such as osteochondroplasty and labral repair or resection. PROMs consisting of HAGOS, EQ-5 D...

Barriers to cervical cancer screening faced by immigrants: a registry-based study of 1.4 million women in Norway.

Science.gov (United States)

Leinonen, Maarit K; Campbell, Suzanne; Ursin, Giske; Tropé, Ameli; Nygård, Mari

2017-10-01

Immigrants from certain low- and middle-income countries are more prone to cancers attributed to viral infections in early life. Cervical cancer is caused by human papillomavirus but is highly preventable by regular screening. We assessed participation among immigrants in a population-based cervical screening programme and identified factors that predicted non-adherence within different immigrant groups. We used data from several nationwide registries. The study population consisted of 208 626 (15%) immigrants and 1 157 223 (85%) native Norwegians. Non-adherence was defined as no eligible screening test in 2008-12. We estimated prevalence ratios with 95% confidence intervals (CIs) for factors associated with non-adherence by modified Poisson regression. In total, 52% of immigrants were not screened. All immigrants showed 1.72 times higher non-adherence rates (95% CI 1.71-1.73) compared with native Norwegian women when adjusted for age and parity. The proportion of non-adherent immigrants varied substantially by region of origin and country of origin. Being unemployed or not in the workforce, being unmarried, having low income and having a male general practitioner was associated with non-adherence regardless of region of origin. Living immigrant groups. An increasing proportion of immigrants and low screening participation among them pose new public health challenges in Europe. Immigrants are diverse in terms of their sociodemographic attributes and screening participation. Tailored information and service delivery may be necessary to increase cancer screening among immigrants. © The Author 2017. Published by Oxford University Press on behalf of the European Public Health Association.

Contributions and Limitations of National Cervical Cancer Screening Program in Korea: A Retrospective Observational Study

Directory of Open Access Journals (Sweden)

Jung Hyun Lee, MPH

2018-03-01

Full Text Available Summary: Purpose: The purpose of this study was to evaluate the contributions and limitations of the cervical cancer screening test with accuracy in Korea. Methods: This was a retrospective observational study. The study population consisted of all participants who underwent cervical cancer screening test from 2009 to 2014. The data were obtained from National Health Information Database (NHID which represents medical use records of most Koreans. As the indices for contributions and limitations of the screening test, crude detection rate, incidence rate of interval cancer, sensitivity, specificity, and positive predictive value were used. Results: The crude detection rate of screening test per 100,000 participants increased from 100.7 in 2009 to 102.1 in 2014. The incidence rate of interval cancer per 100,000 negatives decreased from 13.0 in 2009 to 10.2 in 2014. The sensitivities of screening test were 88.7% in 2009 and 91.2% in 2014, and the specificities were 98.5% in 2009 and 97.7% in 2014. The positive predictive value of screening decreased from 6.2% in 2009 to 4.3% in 2014. Conclusion: The Korean national cervical cancer screening program has improved in accuracy and has contributed to detection of early stage of cervical cancer over the years. Along with efforts to promote participation in cancer screening programs, quality control over the screening program should be enhanced. Keywords: carcinoma in situ, early detection of cancer, Papanicolaou test, sensitivity and specificity, uterine cervical neoplasms

Concurrent new drug prescriptions and prognosis of early breast cancer

DEFF Research Database (Denmark)

Cronin-Fenton, Deirdre; Lash, Timothy L; Ahern, Thomas P

2018-01-01

Breast Cancer Group (DBCG) clinical database provides high-quality prospectively collected data on breast cancer diagnosis, treatment, and routine follow-up for breast cancer recurrence. Individual-level linkage of DBCG data to other population-based and medical registries in Denmark, including......BACKGROUND: Myriad reports suggest that frequently used prescription drugs alter the viability of breast cancer cells in pre-clinical studies. Routine use of these drugs, therefore, may impact breast cancer prognosis, and could have important implications for public health. METHODS: The Danish...... the Danish National Prescription Registry, has facilitated large population-based pharmacoepidemiology studies. A unique advantage of using DBCG data for such studies is the ability to investigate the association of drugs with breast cancer recurrence rather than breast cancer mortality - which may...

The Contribution of Matrix Metalloproteinase-1 Promoter Genotypes in Taiwan Lung Cancer Risk.

Science.gov (United States)

Shen, Te-Chun; Chang, Wen-Shin; Tsai, Chia-Wen; Chao, Che-Yi; Lin, Yi-Ting; Hsiao, Chieh-Lun; Hsu, Che-Lun; Chen, Wei-Chun; Hsia, Te-Chun; Bau, DA-Tian

2018-01-01

Up-regulation of metallo-proteinase (MMP) proteins has been shown in various types of solid cancers and the genotype of MMP1 has been associated with the risk of solid cancers. The contribution of MMP1 genotype to lung cancer has been investigated in various countries, though, to our knowledge, not in Taiwan. Therefore, in this study, we focused on the contribution of a polymorphism in the promoter region of MMP1 to lung cancer risk in Taiwan population. Genomic DNA was isolated from peripheral blood of 358 patients with lung cancer and 716 healthy individuals (non-cancer patients). MMP1 rs1799750 polymorphic genotypes of each sample were determined using the typical methodology of polymerase chain reaction-restriction fragment length polymorphism (PCR-RFLP). The percentages of 2G/2G, 1G/2G, and 1G/1G for MMP1 -1607 genotypes were 34.4%, 41.3% and 24.3% in the disease group and 33.9%, 44.0%, and 22.1% in the control group (p trend=0.6298), respectively. The results of carrier comparisons in dominant and recessive models also support the findings that 1G or 2G appears not to be a determinant allelic biomarker for Taiwan lung cancer. The MMP1 -1607 1G allele is a non-significant protective biomarker for lung cancer in Taiwan. Copyright© 2018, International Institute of Anticancer Research (Dr. George J. Delinasios), All rights reserved.

Environmental Agents Service (EAS) Registry System of Records

Data.gov (United States)

Department of Veterans Affairs — The Environmental Agent Service (EAS) Registries is the information system encompassing the Ionizing Radiation Registry (IRR), the Agent Orange Registry (AOR), and...

International Consortium of Vascular Registries Consensus Recommendations for Peripheral Revascularisation Registry Data Collection

DEFF Research Database (Denmark)

Behrendt, Christian-Alexander; Bertges, Daniel; Eldrup, Nikolaj

2018-01-01

intervention; (ix) complications; and (x) follow up. CONCLUSION: A modified Delphi study allowed 25 international vascular registry experts to achieve a consensus recommendation for a minimum core data set and an optimum data set for peripheral arterial revascularisation registries. Continued global...... via internet exchange and face to face discussions. In total, 187 different items from the various registry data forms were identified for potential inclusion in the recommended data set. Ultimately, 79 items were recommended for inclusion in minimum core data sets, including 65 items in the level 1...... data set, and an additional 14 items in the more specific level 2 and 3 recommended data sets. Data elements were broadly divided into (i) patient characteristics; (ii) comorbidities; (iii) current medications; (iv) lesion treated; (v) procedure; (vi) bypass; (vii) endarterectomy (viii) catheter based...

Contribution of radon and radon daughters to respiratory cancer

International Nuclear Information System (INIS)

Harley, N.; Samet, J.M.; Cross, F.T.; Hess, T.; Muller, J.; Thomas, D.

1986-01-01

This article reviews studies on the contribution of radon and radon daughters to respiratory cancer and proposes recommendations for further research, particularly a national radon survey. The steady-state outdoor radon concentration averages 200 pCi/m3, and indoor levels are about 4 times higher. The primary source of radon in homes is the underlying soil; entry depends on multiple variables and reduced ventilation for energy conservation increases indoor radon levels. Occupational exposures are expressed in units of radon daughter potential energy concentration or working level (WL). Cumulative exposure is the product of the working level and the time exposed. The unit for cumulative exposure is the working level month (WLM). The occupational standard for radon exposure is 4 WLM/year, and 2 WLM/year has been suggested as a guideline for remedial action in homes. Epidemiologic studies show that miners with cumulative radon daughter exposures somewhat below 100 WLM have excess lung cancer mortality. Some 3% to 8% of miners studied have developed lung cancer attributable to radon daughters. All of the underground mining studies show an increased risk of lung cancer with radon daughter exposure. All cell types of lung cancer increased with radon exposure. If radon and smoking act in a multiplicative manner, then the risk for smokers could be 10 times that for nonsmokers. The potential risk of lung cancer appears to be between 1 and 2 per 10,000/WLM, which yields a significant number of lung cancers as some 220 million persons in the United States are exposed on average to 10 to 20 WLM/lifetime

Predictors of Lymphedema Following Breast Cancer Surgery

National Research Council Canada - National Science Library

Swenson, Karen K

2006-01-01

.... Cases will be identified in the physical therapy or cancer centers. Controls will be identified using the oncology registry and include patients with breast cancer surgery who have not developed lymphedema...

[Incidence and mortality of cervical cancer in China, 2014].

Science.gov (United States)

Gu, X Y; Zheng, R S; Sun, K X; Zhang, S W; Zeng, H M; Zou, X N; Chen, W Q; He, J

2018-04-23

Objective: To estimate the incidence and mortality of cervical cancer in China based on the cancer registry data in 2014, collected by the National Central Cancer Registry (NCCR). Methods: There were 449 cancer registries submitted cervical cancer incidence and deaths in 2014 to NCCR. After evaluating the data quality, 339 registries' data were accepted for analysis and stratified by areas (urban/rural) and age group. Combined with data on national population in 2014, the nationwide incidence and mortality of cervical cancer were estimated. Chinese population census in 2000 and Segi's population were used for age-standardized incidence/mortality rates. Results: Qualified 339 cancer registries covered a total of 288 243 347 populations (144 061 915 in urban and 144 181 432 in rural areas). The percentage of morphologically verified cases and death certificate-only cases were 86.07% and 1.01%, respectively. The mortality to incidence ratio was 0.30. The estimates of new cases were about 102 000 in China in 2014, with a crude incidence rate of 15.30/100 000. The age-standardized incidence rates by China standard population (ASR China) and world standard population (ASR world) of cervical cancer were 11.57/100 000 and 10.61/100 000, respectively. Cumulative incidence rate of cervical cancer in China was 1.11%. The crude and ASR China incidence rates in urban areas were 15.27/100 000 and 11.16/100 000, respectively, whereas those were 15.34/100 000 and 12.14/100 000 in rural areas. The estimates of cervical cancer deaths were about 30 400 in China in 2014, with a crude mortality rate of 4.57/100 000. The ASR China and ASR world mortality rates were 3.12/100 000 and 2.98/100 000, respectively, with a cumulative mortality rate (0-74 years old) of 0.33%. The crude and ASR China mortality rates were 4.44/100 000 and 2.92/100 000 in urban areas, respectively, whereas those were 4.72/100 000 and 3.39/100 000 in rural areas. Conclusions: There is still a heavy burden of

Cancer in first-degree relatives and risk of testicular cancer in Denmark

Science.gov (United States)

Nordsborg, Rikke Baastrup; Meliker, Jaymie R.; Wohlfahrt, Jan; Melbye, Mads; Raaschou-Nielsen, Ole

2011-01-01

Familial aggregation of testicular cancer has been reported consistently, but it is less clear if there is any association between risk of testicular cancer and other cancers in the family. We conducted a population based case-control study to examine the relationship between risk of testicular cancer and 22 different cancers in first-degree relatives. We included 3297 cases of testicular cancer notified to the Danish Cancer Registry between 1991 and 2003. 6594 matched controls were selected from the Danish Civil Registration System, which also provided the identity of 40,104 first-degree relatives of case and controls. Familial cancer was identified by linkage to the Danish Cancer Registry, and we used conditional logistic regression to analyse whether cancer among first-degree relatives was associated with higher risk of testicular cancer. Rate ratio (RR) for testicular cancer was 4.63 (95% CI: 2.41–8.87) when a father, 8.30(95% CI: 3.81–18.10) when a brother and 5.23 (95% CI: 1.35–20.26) when a son had testicular cancer compared with no familial testicular cancer. Results were similar when analyses were stratified by histologic subtypes of testicular cancer. Familial Non-Hodgkin lymphoma and oesophageal cancer were associated with testicular cancer; however these may be chance findings. The familial aggregation of testicular and possibly other cancers may be explained by shared genes and/or shared environmental factors, but the mutual importance of each of these is difficult to determine. PMID:21207375

Second primary cancers in survivors of cervical cancer in the Netherlands: Implications for prevention and surveillance

International Nuclear Information System (INIS)

Arnold, Melina; Liu, Lifang; Kenter, Gemma G.; Creutzberg, Carien L.; Coebergh, Jan Willem; Soerjomataram, Isabelle

2014-01-01

Background and purpose: We investigated the effects of socio-demographic, treatment- and tumor-specific determinants on the risk of developing a second malignancy among patients treated for cervical cancer. Material and methods: We included patients with a first cervical cancer (N = 12,048) from the Netherlands Cancer Registry (NCR), 1989–2008. Standardized incidence ratios (SIR) and absolute excess risks (AER) per 10,000 person-years were calculated to estimate the burden of second cancers in cervical cancer survivors. Incidence rate ratios (IRR) were computed to identify predictors for second cancers among cervical cancer survivors. Results: During the study period, 676 (5.6%) patients were diagnosed with a second cancer. Smoking-related cancers contributed the most to the overall burden of second cancers (AER = 21) and risks remained elevated after 10 years of follow-up (SIR = 1.8, 95% CI: 1.4–2.2), yet it decreased markedly in the younger birth cohorts. Cervical cancer survivors who underwent radiotherapy were at higher risk for a second tumor when compared to those without radiotherapy, especially at smoking-related sites (IRR = 1.6 (1.2–2.3)). Conclusion: Patients with cervical cancer had a significantly increased risk for a second cancer compared to the general population, especially for smoking- and irradiation-related tumors. Long-term follow-up suggested the importance of smoking cessation and the benefits of counseling cervical cancer patients accordingly, particularly those who received radiotherapy

Identifying specific non-attending groups in breast cancer screening - population-based registry study of participation and socio-demography

Directory of Open Access Journals (Sweden)

Jensen Line

2012-11-01

Full Text Available Abstract Background A population-based breast cancer screening programme was implemented in the Central Denmark Region in 2008–09. The objective of this registry-based study was to examine the association between socio-demographic characteristics and screening participation and to examine whether the group of non-participants can be regarded as a homogeneous group of women. Method Participation status was obtained from a regional database for all women invited to the first screening round in the Central Denmark Region in 2008–2009 (n=149,234. Participation data was linked to registries containing socio-demographic information. Distance to screening site was calculated using ArcGIS. Participation was divided into ‘participants’ and ‘non-participants’, and non-participants were further stratified into ‘active non-participants’ and ‘passive non-participants’ based on whether the woman called and cancelled her participation or was a ‘no-show’. Results The screening participation rate was 78.9%. In multivariate analyses, non-participation was associated with older age, immigrant status, low OECD-adjusted household income, high and low level education compared with middle level education, unemployment, being unmarried, distance to screening site >20 km, being a tenant and no access to a vehicle. Active and passive non-participants comprised two distinct groups with different socio-demographic characteristics, with passive non-participants being more socially deprived compared with active non-participants. Conclusion Non-participation was associated with low social status e.g. low income, unemployment, no access to vehicle and status as tenant. Non-participants were also more likely than participants to be older, single, and of non-Danish origin. Compared to active non-participants, passive non-participants were characterized by e.g. lower income and lower educational level. Different interventions might be warranted to increase

14 CFR 47.19 - FAA Aircraft Registry.

Science.gov (United States)

2010-01-01

... 14 Aeronautics and Space 1 2010-01-01 2010-01-01 false FAA Aircraft Registry. 47.19 Section 47.19... REGISTRATION General § 47.19 FAA Aircraft Registry. Each application, request, notification, or other communication sent to the FAA under this Part must be mailed to the FAA Aircraft Registry, Department of...

14 CFR 49.11 - FAA Aircraft Registry.

Science.gov (United States)

2010-01-01

... 14 Aeronautics and Space 1 2010-01-01 2010-01-01 false FAA Aircraft Registry. 49.11 Section 49.11... AIRCRAFT TITLES AND SECURITY DOCUMENTS General § 49.11 FAA Aircraft Registry. To be eligible for recording, a conveyance must be mailed to the FAA Aircraft Registry, Department of Transportation, Post Office...

Cancer incidence among copper smelting and nickel refining workers in Finland.

Science.gov (United States)

Pavela, Markku; Uitti, Jukka; Pukkala, Eero

2017-01-01

Among workers employed at a nickel refinery in Harjavalta, Finland an increased risk of lung and sinus cancer has been demonstrated in two previous studies. The current study adds 16 more years of follow-up to these studies. A total of 1,115 persons exposed to nickel and 194 non-exposed workers in the Harjavalta nickel smelter and refinery were followed up for cancer from 1967 to 2011 through the Finnish Cancer Registry. The total number of cancer cases in men was 251 (Standardized incidence ratio (SIR) 1.05) and in women 12 (SIR 1.22). In the most nickel-exposed work site (refinery), there were 14 lung cancers (SIR 2.01) and 3 sinonasal cancers (SIR 26.7, 95%). It is likely that exposure to nickel compounds is the main reason for elevated nasal cancer risk among the nickel refinery employees and may also contribute to the excess risk of lung cancer. Am. J. Ind. Med. 60:87-95, 2017. © 2016 Wiley Periodicals, Inc. © 2016 Wiley Periodicals, Inc.

System delays in breast cancer

African Journals Online (AJOL)

registry with an audit capability. We suggest targeting an 8-week period for the work-up and staging of every patient with breast cancer. The establishment of ... or less' and 'women with symptoms and signs suggestive of breast cancer must be ...

Artificial Nutritional Support Registries: systematic review.

Science.gov (United States)

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

2009-01-01

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

The National Mental Health Registry (NMHR).

Science.gov (United States)

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

2008-09-01

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

Predictors of prostate cancer specific mortality after radical prostatectomy: 10 year oncologic outcomes from the Victorian Radical Prostatectomy Registry.

Science.gov (United States)

Bolton, Damien M; Papa, Nathan; Ta, Anthony D; Millar, Jeremy; Davidson, Adee-Jonathan; Pedersen, John; Syme, Rodney; Patel, Manish I; Giles, Graham G

2015-10-01

To identify the ability of multiple variables to predict prostate cancer specific mortality (PCSM) in a whole of population series of all radical prostatectomies (RP) performed in Victoria, Australia. A total of 2154 open RPs were performed in Victoria between July 1995 and December 2000. Subjects without follow up data, Gleason grade, pathological stage were excluded as were those who had pT4 disease or received neoadjuvant treatment. 1967 cases (91.3% of total) met the inclusion criteria for this study. Tumour characteristics were collated via a central registry. We used competing hazards regression models to investigate associations. At median follow up of 10.3 years pT stage of RP (P pattern at RP in this whole of population study suggests a need to avoid understaging/grading in the process of cancer diagnosis and active surveillance protocols. Multi-modality therapy is likely to have a greater impact on PCSM in higher stage and Gleason grade disease. Identification of increased PCSM with rural residency and with involvement of a trainee urologist, and reduction in PCSM with higher surgeon volume all suggest potential for improved PC outcomes to be achieved with changes to surgical training and service delivery. © 2015 The Authors BJU International © 2015 BJU International Published by John Wiley & Sons Ltd.

Breast Cancer: Treatment, Outcomes, and Cost-Effectiveness

National Research Council Canada - National Science Library

McClellan, Mark

2000-01-01

...) use Medicare data, linked SEER cancer registry data, and claims data from large firms to analyze trends in diagnosis rates and staging, treatment, expenditures, and outcomes for Americans with breast cancer; and (3...

Perinatal characteristics and breast cancer risk in daughters: a Scandinavian population-based study

OpenAIRE

Troisi, R.; Grotmol, T.; Jacobsen, J.; Tretli, S.; Toft-Sørensen, H.; Gissler, M.; Kaaja, R.; Potischman, N.; Ekbom, A.; N. Hoover, R.; Stephansson, O.

2013-01-01

The in utero origins of breast cancer are an increasing focus of research. However, the long time period between exposure and disease diagnosis, and the lack of standardized perinatal data collection makes this research challenging. We assessed perinatal factors, as proxies for in utero exposures, and breast cancer risk using pooled, population-based birth and cancer registry data. Birth registries provided information on perinatal exposures. Cases were females born in Norway, Sweden or Denma...

Occupational Disease Registries-Characteristics and Experiences.

Science.gov (United States)

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

2017-06-01

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

Education Level Is a Strong Prognosticator in the Subgroup Aged More Than 50 Years Regardless of the Molecular Subtype of Breast Cancer: A Study Based on the Nationwide Korean Breast Cancer Registry Database.

Science.gov (United States)

Hwang, Ki-Tae; Noh, Woochul; Cho, Se-Heon; Yu, Jonghan; Park, Min Ho; Jeong, Joon; Lee, Hyouk Jin; Kim, Jongjin; Oh, Sohee; Kim, Young A

2017-10-01

This study investigated the role of the education level (EL) as a prognostic factor for breast cancer and analyzed the relationship between the EL and various confounding factors. The data for 64,129 primary breast cancer patients from the Korean Breast Cancer Registry were analyzed. The EL was classified into two groups according to the education period; the high EL group (≥ 12 years) and low EL group (EL conferred a superior prognosis compared to a low EL in the subgroup aged > 50 years (hazard ratio, 0.626; 95% confidence interval [CI], 0.577 to 0.678) but not in the subgroup aged ≤ 50 years (hazard ratio, 0.941; 95% CI, 0.865 to 1.024). The EL was a significant independent factor in the subgroup aged > 50 years according to multivariate analyses. The high EL group showed more favorable clinicopathologic features and a higher proportion of patients in this group received lumpectomy, radiation therapy, and endocrine therapy. In the high EL group, a higher proportion of patients received chemotherapy in the subgroups with unfavorable clinicopathologic features. The EL was a significant prognosticator across all molecular subtypes of breast cancer. The EL is a strong independent prognostic factor for breast cancer in the subgroup aged > 50 years regardless of the molecular subtype, but not in the subgroup aged ≤ 50 years. Favorable clinicopathologic features and active treatments can explain the main causality of the superior prognosis in the high EL group.

Assessing Ontario's Personal Support Worker Registry

Directory of Open Access Journals (Sweden)

Audrey Laporte

2013-08-01

Full Text Available In response to the growing role of personal support workers (PSWs in the delivery of health care services to Ontarians, the Ontario government has moved forward with the creation of a PSW registry. This registry will be mandatory for all PSWs employed by publicly funded health care employers, and has the stated objectives of better highlighting the work that PSWs do in Ontario, providing a platform for PSWs and employers to more easily access the labour market, and to provide government with information for human resources planning. In this paper we consider the factors that brought the creation of a PSW registry onto the Ontario government’s policy agenda, discuss how the registry is being implemented, and provide an analysis of the strengths and weaknesses of this policy change.

Burden and Chemoprevention of Skin Cancer

NARCIS (Netherlands)

L.M. Hollestein (Loes)

2013-01-01

markdownabstractThe incidence of skin cancer is increasing in the Netherlands since 1989, the first year of the Netherlands Cancer Registry (NCR). In 2010 more than 43,000 patients were newly diagnosed with skin cancer in the Netherlands. During a life time at least 1 in 5 persons living in

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

Science.gov (United States)

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

2018-04-01

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

Insights into cancer surveillance in Central and Eastern Europe, Israel and Turkey.

Science.gov (United States)

Vrdoljak, E; Torday, L; Sella, A; Leyman, S; Bavbek, S; Kharkevich, G; Mardiak, J; Szczylik, C; Znaor, A; Wilking, N

2015-01-01

The current cancer landscape within transitional economies in central and Eastern Europe and the Mediterranean area is not particularly optimistic. Current perceptions are often based on extrapolations from other countries and regions; and hence the authors collaborated with the South Eastern Europe Oncology Group (SEEROG) to collect information on cancer registration in Central and Eastern Europe, Israel and Turkey. Healthcare authorities and specialist oncology centres in 21 countries in the region were contacted for information on cancer registries in their countries. Based on this information, the authors believe that the recording and reporting of data on cancer in the region is at an acceptable level. The authors discuss and compare institution- and population-based registries, and present opinions on elements of an 'ideal registry' based on the survey replies and comparisons with other registries. A comparison with the sources used for GLOBOCAN 2008 illustrates the need for consistent data to be communicated, published and utilised throughout the region and the oncology community. The authors conclude by considering the potential value of collaboration between health authorities across the region, as well as between the clinical and epidemiological communities, to ensure that cancer data are consistently collected, verified and made public. © 2013 John Wiley & Sons Ltd.

Cancer risk in systemic lupus

DEFF Research Database (Denmark)

Bernatsky, Sasha; Ramsey-Goldman, Rosalind; Labrecque, Jeremy

2013-01-01

OBJECTIVE: To update estimates of cancer risk in SLE relative to the general population. METHODS: A multisite international SLE cohort was linked with regional tumor registries. Standardized incidence ratios (SIRs) were calculated as the ratio of observed to expected cancers. RESULTS: Across 30 c...

The Contribution of Matrix Metalloproteinase-1 Genotype to Oral Cancer Susceptibility in Taiwan.

Science.gov (United States)

Sun, Kuo-Ting; Tsai, Chia-Wen; Chang, Wen-Shin; Shih, Liang-Chun; Chen, Liang-Yu; Tsai, Ming-Hsiu; Ji, Hong-Xue; Hsiao, Chieh-Lun; Liu, Yu-Cheng; Li, Chi-Yuan; Bau, DA-Tian

2016-01-01

Metalloproteinases (MMPs) are a family of multifunctional proteins which have been shown to be up-regulated in various types of cancer. However, the contribution of MMP1 genotype to oral cancer has not been elucidated. This study aimed to evaluate the contribution of MMP1 promoter 1607 genotype to the risk of oral cancer. In this case-control study, MMP1 genotype and its interaction with consumption of areca, cigarettes, and alcohol in determining oral cancer risk were investigated in 788 patients with oral cancer and 956 gender-matched healthy controls. The distribution of 2G/2G, 1G/2G and 1G/1G for MMP1 promoter 1607 genotype was 36.8%, 40.2% and 23.0% in the oral cancer group and 34.3%, 44.9% and 20.8% in the non-cancer control group, respectively (p for trend=0.1454). We also analyzed the allelic frequency distributions and found that the variant 1G allele of MMP1 promoter 1607 conferred similar oral cancer susceptibility as the wild-type 2G allele (odds ratio=0.99, 95% confidence interval=0.87-1.14, p=0.9199). As for the gene-lifestyle interaction, there was an obvious protective effect of MMP1 promoter 1607 1G/2G genotype on the risk of oral cancer among smokers (odds ratio=0.71, 95% confidence interval=0.55-0.91, p=0.0076), but not non-smokers. There was no interaction between MMP1 promoter 1607 genotype and areca chewing or alcohol drinking habits. The 1G/2G genotype of MMP1 promoter 1607 may have a protective effect on oral cancer risk for smokers. The detailed mechanisms involved in this require further investigation. Copyright © 2016 International Institute of Anticancer Research (Dr. John G. Delinassios), All rights reserved.

Registries Help Moms Measure Medication Risks

Science.gov (United States)

... in the case of the North American Antiepileptic Drug Pregnancy Registry, which studies the effects of drugs for ... is taking. For example, the North American Antiepileptic Drug Pregnancy Registry website lists more than 30 medications being ...

Methylation of Breast Cancer Predisposition Genes in Early-Onset Breast Cancer: Australian Breast Cancer Family Registry.

Directory of Open Access Journals (Sweden)

Cameron M Scott

Full Text Available DNA methylation can mimic the effects of both germline and somatic mutations for cancer predisposition genes such as BRCA1 and p16INK4a. Constitutional DNA methylation of the BRCA1 promoter has been well described and is associated with an increased risk of early-onset breast cancers that have BRCA1-mutation associated histological features. The role of methylation in the context of other breast cancer predisposition genes has been less well studied and often with conflicting or ambiguous outcomes. We examined the role of methylation in known breast cancer susceptibility genes in breast cancer predisposition and tumor development. We applied the Infinium HumanMethylation450 Beadchip (HM450K array to blood and tumor-derived DNA from 43 women diagnosed with breast cancer before the age of 40 years and measured the methylation profiles across promoter regions of BRCA1, BRCA2, ATM, PALB2, CDH1, TP53, FANCM, CHEK2, MLH1, MSH2, MSH6 and PMS2. Prior genetic testing had demonstrated that these women did not carry a germline mutation in BRCA1, ATM, CHEK2, PALB2, TP53, BRCA2, CDH1 or FANCM. In addition to the BRCA1 promoter region, this work identified regions with variable methylation at multiple breast cancer susceptibility genes including PALB2 and MLH1. Methylation at the region of MLH1 in these breast cancers was not associated with microsatellite instability. This work informs future studies of the role of methylation in breast cancer susceptibility gene silencing.

Can we rely on cancer mortality data? Checking the validity of cervical cancer mortality data for Slovenia

International Nuclear Information System (INIS)

Primic Zakelj, M.; Pompe Kirn, V.; Skrlec, F.; Selb, J.

2001-01-01

Background. Valid inference on cervical cancer mortality is very difficult since - on the basis of death certificates - it is not always possible to distinguish between cervix, corpus and unspecified uterine cancer deaths. Our aim was to estimate the extent to which cervical cancer as the official cause of death reflects the true mortality from cervical cancer in Slovenia. Material and methods. The data on 2245 deaths from cervix, corpus uteri, and uterus-unspecified cancers for the period 1985-1999 were linked to the Cancer Registry of Slovenia database from the mortality database of Slovenia. Results. Officially, in the period 1985-1999, there were 878 cervical cancer deaths. The comparison of these causes of death with the cancer sites registered in the Cancer Registry revealed that they include only 87.7% patients with a previous diagnosis of cervical cancer. Of 650 corpus uteri cancer deaths, 17. 1 % of patients were registered to have cervical cancer, and of 717 unspecified uterine cancer deaths, 31.4% were registered. Taking into account the correctly identified cervical cancer cases among cervical cancer deaths and misclassified cervical cancer deaths as corpus uteri and unspecified uterine, the corrected number of deaths would be 1106. Conclusions. When evaluating the impact of cervical cancer mortality from national mortality rates, the stated underestimation should be taken into account. However, this does not hold for some other cancers. (author)

Definition, epidemiology and registries of pulmonary hypertension.

Science.gov (United States)

Awdish, R; Cajigas, H

2016-05-01

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

Hydrochlorothiazide use and risk of nonmelanoma skin cancer

DEFF Research Database (Denmark)

Arnspang, Sidsel; Gaist, David; Johannesdottir Schmidt, Sigrun Alba

2018-01-01

BACKGROUND: Hydrochlorothiazide, one of the most frequently used diuretic and antihypertensive drugs in the United States and Western Europe, is photosensitizing and has previously been linked to lip cancer. OBJECTIVE: To examine the association between hydrochlorothiazide use and the risk of basal...... cell carcinoma (BCC) and squamous cell carcinoma (SCC). METHODS: From the Danish Cancer Registry, we identified patients (cases) with NMSC during 2004-2012. Controls were matched 1:20 by age and sex. Cumulative hydrochlorothiazide use (1995-2012) was assessed from the Danish Prescription Registry...

Contribution of Neuroinflammation to the Pathogenesis of Cancer Cachexia.

Science.gov (United States)

Molfino, Alessio; Gioia, Gianfranco; Rossi Fanelli, Filippo; Laviano, Alessandro

2015-01-01

Inflammation characterizes the course of acute and chronic diseases and is largely responsible for the metabolic and behavioral changes occurring during the clinical journey of patients. Robust data indicate that, during cancer, functional modifications within brain areas regulating energy homeostasis contribute to the onset of anorexia, reduced food intake, and increased catabolism of muscle mass and adipose tissue. In particular, functional changes are associated with increased hypothalamic concentration of proinflammatory cytokines, which suggests that neuroinflammation may represent the adaptive response of the brain to peripheral challenges, including tumor growth. Within this conceptual framework, the vagus nerve appears to be involved in conveying alert signals to the hypothalamus, whereas hypothalamic serotonin appears to contribute to triggering catabolic signals.

Living with the physical and mental consequences of an ostomy: a study among 1-10-year rectal cancer survivors from the population-based PROFILES registry.

Science.gov (United States)

Mols, Floortje; Lemmens, Valery; Bosscha, Koop; van den Broek, Wim; Thong, Melissa S Y

2014-09-01

This study examined the physical and mental consequences of an ostomy among 1-10-year rectal cancer survivors. Patients with rectal cancer diagnosed from 2000 to 2009, as registered in the population-based Eindhoven Cancer Registry, received a questionnaire on quality of life (QOL; EORTC QLQ-C30), disease-specific health status (EORTC QLQ-CR38), depression and anxiety (HADS), illness perceptions (Brief Illness Perception Questionnaire), and health care utilization; 76% (n = 1019) responded. A total of 408 (43%) rectal cancer survivors had an ostomy at survey and they reported a statistically significant and clinically relevant lower physical, role, and social functioning, and global health status/QOL but fewer problems with constipation and diarrhea compared with those without an ostomy. Also, they had a significantly worse body image, more male sexual problems, and fewer gastrointestinal problems although these differences were not clinically relevant. No differences regarding the prevalence of symptoms of anxiety and depression were found. Survivors with an ostomy believed that their illness have significantly more serious consequences, will last longer (clinically relevant), and were more concerned about their illness compared with those without an ostomy. Survivors with an ostomy visited their medical specialist, but not their general practitioner, significantly more often. Also, they more often received additional support after cancer treatment. Rectal cancer survivors with an ostomy have a lower QOL, worse illness perceptions, and a higher health care consumption compared with those without an ostomy 1-10 years after diagnosis. Copyright © 2014 John Wiley & Sons, Ltd.

Impact of cancer diagnosis and treatment on glycaemic control among individuals with colorectal cancer using glucose lowering drugs

NARCIS (Netherlands)

Zanders, M.M.J.; van Herk-Sukel, M.P.P.; Herings, R.M.C.; van de Poll-Franse, L.V.; Haak, H.

2016-01-01

Aims This study aims to evaluate the impact of cancer and its treatment on HbA1c values among individuals with colorectal cancer (CRC) using glucose-lowering drugs (GLDs). Methods Patients with primary CRC (1998–2011) were selected from the Eindhoven Cancer Registry and linked to the PHARMO Database

Modeling cancer registration processes with an enhanced activity diagram.

Science.gov (United States)

Lyalin, D; Williams, W

2005-01-01

Adequate instruments are needed to reflect the complexity of routine cancer registry operations properly in a business model. The activity diagram is a key instrument of the Unified Modeling Language (UML) for the modeling of business processes. The authors aim to improve descriptions of processes in cancer registration, as well as in other public health domains, through the enhancements of an activity diagram notation within the standard semantics of UML. The authors introduced the practical approach to enhance a conventional UML activity diagram, complementing it with the following business process concepts: timeline, duration for individual activities, responsibilities for individual activities within swimlanes, and descriptive text. The authors used an enhanced activity diagram for modeling surveillance processes in the cancer registration domain. Specific example illustrates the use of an enhanced activity diagram to visualize a process of linking cancer registry records with external mortality files. Enhanced activity diagram allows for the addition of more business concepts to a single diagram and can improve descriptions of processes in cancer registration, as well as in other domains. Additional features of an enhanced activity diagram allow to advance the visualization of cancer registration processes. That, in turn, promotes the clarification of issues related to the process timeline, responsibilities for particular operations, and collaborations among process participants. Our first experiences in a cancer registry best practices development workshop setting support the usefulness of such an approach.

Leukaemia and occupation: a New Zealand Cancer Registry-based case-control Study.

Science.gov (United States)

McLean, David; Mannetje, Andrea 't; Dryson, Evan; Walls, Chris; McKenzie, Fiona; Maule, Milena; Cheng, Soo; Cunningham, Chris; Kromhout, Hans; Boffetta, Paolo; Blair, Aaron; Pearce, Neil

2009-04-01

To examine the association between occupation and leukaemia. We interviewed 225 cases (aged 20-75 years) notified to the New Zealand Cancer Registry during 2003-04, and 471 controls randomly selected from the Electoral Roll collecting demographic details, information on potential confounders and a comprehensive employment history. Associations between occupation and leukaemia were analysed using logistic regression adjusted for gender, age, ethnicity and smoking. Elevated odds ratios (ORs) were observed in agricultural sectors including horticulture/fruit growing (OR: 2.62, 95% confidence interval (CI): 1.51, 4.55), plant nurseries (OR: 7.51, 95% CI: 1.85, 30.38) and vegetable growing (OR: 3.14, 95% CI: 1.18, 8.40); and appeared greater in women (ORs: 4.71, 7.75 and 7.98, respectively). Elevated ORs were also observed in market farmers/crop growers (OR: 1.84, 95% CI: 1.12, 3.02), field crop/vegetable growers (OR: 3.98, 95% CI: 1.46, 10.85), market gardeners (OR: 5.50, 95% CI: 1.59, 19.02), and nursery growers/workers (OR: 4.23, 95% CI: 1.34, 13.35); also greater in women (ORs: 3.48, 7.62, 15.74 and 11.70, respectively). These elevated ORs were predominantly for chronic lymphocytic leukaemia (CLL). Several associations persisted after semi-Bayes adjustment. Elevated ORs were observed in rubber/plastics products machine operators (OR: 3.76, 95% CI: 1.08, 13.08), predominantly in plastic product manufacturing. CLL was also elevated in tailors and dressmakers (OR: 7.01, 95% CI: 1.78, 27.68), cleaners (OR: 2.04, 95% CI: 1.00, 4.14) and builder's labourers (OR: 4.03, 95% CI: 1.30, 12.53). These findings suggest increased leukaemia risks associated with certain agricultural, manufacturing, construction and service occupations in New Zealand.

Extracolonic Cancer in Inflammatory Bowel Disease: Data from the GETECCU Eneida Registry.

Science.gov (United States)

Chaparro, María; Ramas, M; Benítez, J M; López-García, A; Juan, A; Guardiola, J; Mínguez, M; Calvet, X; Márquez, L; Fernández Salazar, L I; Bujanda, L; García, C; Zabana, Y; Lorente, R; Barrio, J; Hinojosa, E; Iborra, M; Cajal, M Domínguez; Van Domselaar, M; García-Sepulcre, M F; Gomollón, F; Piqueras, M; Alcaín, G; García-Sánchez, V; Panés, J; Domènech, E; García-Esquinas, E; Rodríguez-Artalejo, F; Gisbert, J P

2017-07-01

The objective of this study was (a) To know the prevalence and distribution of extracolonic cancer (EC) in patients with inflammatory bowel disease (IBD); (b) To estimate the incidence rate of EC; (c) To evaluate the association between EC and treatment with immunosuppressants and anti-tumor necrosis factor (TNF) agents. This was an observational cohort study. IBD and inclusion in the ENEIDA Project (a prospectively maintained registry) from GETECCU. Patients with EC before the diagnosis of IBD, lack of relevant data for this study, and previous treatment with immunosuppressants other than corticosteroids, thiopurines, methotrexate, or anti-TNF agents. The Kaplan-Meier method was used to evaluate the impact of several variables on the risk of EC, and any differences between survival curves were evaluated using the log-rank test. Stepwise multivariate Cox regression analysis was used to investigate factors potentially associated with the development of EC, including drugs for the treatment of IBD, during follow-up. A total of 11,011 patients met the inclusion criteria and were followed for a median of 98 months. Forty-eight percent of patients (5,303) had been exposed to immunosuppressants or anti-TNF drugs, 45.8% had been exposed to thiopurines, 4.7% to methotrexate, and 21.6% to anti-TNF drugs. The prevalence of EC was 3.6%. In the multivariate analysis, age (HR=1.05, 95% CI=1.04-1.06) and having smoked (hazards ratio (HR)=1.47, 95% confidence interval (CI)=1.10-1.80) were the only variables associated with a higher risk of EC. Neither immunosuppressants nor anti-TNF drugs seem to increase the risk of EC. Older age and smoking were associated with a higher prevalence of EC.

Towards a national trauma registry for the United Arab Emirates

Directory of Open Access Journals (Sweden)

Barka Ezedin

2010-07-01

Full Text Available Abstract Background Trauma is a major health problem in the United Arab Emirates (UAE as well as worldwide. Trauma registries provide large longitudinal databases for analysis and policy improvement. We aim in this paper to report on the development and evolution of a national trauma registry using a staged approach by developing a single-center registry, a two-center registry, and then a multi-center registry. The three registries were established by developing suitable data collection forms, databases, and interfaces to these databases. The first two registries collected data for a finite period of time and the third is underway. The steps taken to establish these registries depend on whether the registry is intended as a single-center or multi-center registry. Findings Several issues arose and were resolved during the development of these registries such as the relational design of the database, whether to use a standalone database management system or a web-based system, and the usability and security of the system. The inclusion of preventive medicine data elements is important in a trauma registry and the focus on road traffic collision data elements is essential in a country such as the UAE. The first two registries provided valuable data which has been analyzed and published. Conclusions The main factors leading to the successful establishment of a multi-center trauma registry are the development of a concise data entry form, development of a user-friendly secure web-based database system, the availability of a computer and Internet connection in each data collection center, funded data entry personnel well trained in extracting medical data from the medical record and entering it into the computer, and experienced personnel in trauma injuries and data analysis to continuously maintain and analyze the registry.

Functional requirements regarding medical registries--preliminary results.

Science.gov (United States)

Oberbichler, Stefan; Hörbst, Alexander

2013-01-01

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

Concept analysis of cancer survivorship and contributions to oncological nursing.

Science.gov (United States)

de Oliveira, Rafaela Azevedo Abrantes; da Conceição, Vander Monteiro; Araujo, Jeferson Santos; Zago, Márcia Maria Fontão

2018-02-01

This study aims to analyse the concept of cancer survivorship using Rodgers' evolutionary concept analysis model. The lack of a consensus definition as well as the confusion and debate concerning the definitions of "survivor" and "cancer survivorship" hinder an understanding of the intrinsic needs associated with the latter. Concept analysis. A systematic literature search was performed using the following databases: PubMed, CINAHL, Web of Science, LILACS, and PsycINFO with studies published between 2000 and 2014. The final sample contained 39 studies that were analysed on the basis of Rodgers' model and inductive thematic analysis, discussed through the lens of the medical anthropology concept of culture. Cancer survivorship is a broad concept that can be understood using 8 themes: changes in life plans, positive and negative aspect dualities, life reflections, identity change, individual experiences, symptom control, the need for support, and quality of care. These themes are summarized using 2 attributes: liminality process and culturally congruent care. This article contributes to understanding of cancer survivorship and the processes that are intrinsic to this concept. It calls for future investigations to enhance cancer survivorship across its 2 domains at the personal (patient's life) and clinical (nursing practice) levels. © 2017 John Wiley & Sons Australia, Ltd.

Cutaneous cancers in the Mosan region and Ardennes of Belgium.

Science.gov (United States)

Piérard-Franchimont, C; Uhoda, I; Piérard, G E

1999-01-01

The ratios of basal cell carcinomas (BBC) to squamous cell carcinomas (SCC) and to malignant melanomas (MM) have changed over time in the white population throughout the world. To evaluate the incidence of skin cancers in the Mosan region and the Belgian Ardennes over the past 6 years. In contrast with epidemiological data reported by the Belgian National Cancer Registry, cutaneous cancers are the commonest malignancies occurring in humans. At the present time, the ratio BCC:SCC roughly equals 4 to 1. When combined, the incidence of BCC and SCC is about 10 times greater than that of MM. The rate of detection of skin cancers does not always correlate with the rate of notification of a national registry.

The Danish Heart Registry

DEFF Research Database (Denmark)

Özcan, Cengiz; Juel, Knud; Lassen, Jens Flensted

2016-01-01

AIM: The Danish Heart Registry (DHR) seeks to monitor nationwide activity and quality of invasive diagnostic and treatment strategies in patients with ischemic heart disease as well as valvular heart disease and to provide data for research. STUDY POPULATION: All adult (≥15 years) patients...... undergoing coronary angiography (CAG), percutaneous coronary intervention (PCI), coronary artery bypass grafting, and heart valve surgery performed across all Danish hospitals were included. MAIN VARIABLES: The DHR contains a subset of the data stored in the Eastern and Western Denmark Heart Registries (EDHR...

Sanitary surveillance in France in relation with the Chernobylsk accident. Updated situation on thyroid cancers and epidemiological studies during 2006; Surveillance sanitaire en France en lien avec l'accident de Tchernobyl. Bilan actualise sur les cancers thyroidiens et etudes epidemiologiques en cours en 2006

Energy Technology Data Exchange (ETDEWEB)

Belot, A. [Institut de veille sanitaire (InVS), Dept. de Biostatistiques des Hospices civils de Lyon, Dept. Maladies Chroniques et Traumatismes (DMCT), Unite cancer, 69 - Lyon (France); Caserio-Schonemann, C. [Institut de veille sanitaire (InVS), DMCT, unite cancer, 94 - Saint-Maurice (France); Cherie-Challine, M. [Institut de veille sanitaire (InVS), DMCT, unitr cancer, 94 - Saint-Maurice (France); Colonna, M. [Registre du cancer de l' Isere - reseau Francim, 38 - Grenoble (France); Lacour, B. [Registre National des Tumeurs Solides de l' enfant (RNTSE) - reseau Francim, 54 - Vandoeuvre-les-Nancy (France); Lasalle, J.L. [Cellule interregionale d' epidemiologie Sud, Drass Paca, 13 - Marseille (France); Leenhardt, L. [Groupe hospitalier Pitie-Salpetriere, Service central de medecine nucleaire, 75 - Paris (France); Orgiazzi, J. [Centre hospitalier Lyon-Sud, Service d' endocrinologie, 69 - Lyon (France); Pirard, Ph. [Institut de veille sanitaire (InVS), Dept. sante environnement (DSE), 94 - Saint-Maurice (France); Schvartz, C. [Registre des cancers thyroidiens de Marne Ardennes - reseau Francim, Centre de lutte contre le cancer, 51 - Reims (France)

2006-07-01

An increase in the incidence of thyroid cancer in children has been reported since 1990 in areas of Belarus, Russia and Ukraine which have been highly contaminated during the Chernobyl accident in 1986. A similar increase is now observed in young adults in the same areas. In France, thyroid cancer is characterized by low occurrence and good prognosis. However, the incidence of thyroid cancer has been increasing for more than 20 years, and in 1986, the Chernobyl cloud of radioactive dust crossed the French territory. Thus, the National institute for public health surveillance (I.n.V.S.) carried out several studies to evaluate whether the incidence increase in thyroid cancer is related to radiation exposure from the Chernobyl accident. Since 2000, the I.n.V.S. is in charge of a national multidisciplinary approach involving a wide range of public health actors, including the French network of cancer registries (Francim). Since 2003, the I.n.V.S. has been working on improving the surveillance system according to the actions described in the national cancer plan 2003-2007. The I.n.V.S. has increased its financial contribution to cancer registries including the national registry of solid tumors in children, which was created in 2000. The Institute is also working on the implementation of a multi source system for the national cancer surveillance in link with cancer registries. For the twentieth anniversary of the Chernobyl accident, the I.n.V.S. is publishing updated results from the latest research conducted in close collaboration with the partners. These results do not support the initial hypothesis of a potential 'Chernobyl effect' in France. The increase in the incidence of thyroid cancer is also reported in most of developed countries. Practices in cancer diagnosis and the increased rate of total thyroidectomy for benign lesion may lead pathologists to unexpectedly discover small thyroid tumors. This fact is likely to explain most of the incidence increase

Implementation of a prospective pregnancy registry for antiretroviral based HIV prevention trials.

Science.gov (United States)

Mhlanga, Felix G; Noguchi, Lisa; Balkus, Jennifer E; Kabwigu, Samuel; Scheckter, Rachel; Piper, Jeanna; Watts, Heather; O'Rourke, Colin; Torjesen, Kristine; Brown, Elizabeth R; Hillier, Sharon L; Beigi, Richard

2018-02-01

Safety data on pregnancy and fetal outcomes among women in HIV prevention trials are urgently needed to inform use of effective antiretroviral agents for HIV prevention. We describe an effective, efficient, and novel method to prospectively collect perinatal safety data concurrent with on-going parent clinical trials. The Microbicide Trials Network (MTN)-016 study is a multinational prospective pregnancy exposure registry designed to capture pregnancy and neonatal outcomes. Studies currently contributing data to this registry included phase I and II safety trials with planned exposures to candidate HIV prevention agents, as well as phase IIB and III efficacy trials capturing data on pregnancy and infant outcomes following inadvertent fetal exposure during study participation. To date, participants from two phase I studies and two effectiveness trials have participated in MTN-016, resulting in 420 pregnant women and 381 infants enrolled. Infant retention has been high, with 329 of 381 (86%) infants completing the 12-month follow-up visit. In a research setting context, it is feasible to establish and implement a prospective, multinational HIV chemoprophylaxis pregnancy registry that will generate pregnancy exposure data in a robust fashion.

Medical radiation workers and the risk of cancer: A retrospective follow-up study

Energy Technology Data Exchange (ETDEWEB)

Ko, Seul Ki; Cha, Eun Shil; Lee, Won Jin [Dept. of Preventive Medicine, Korea University College of Medicine, Seoul (Korea, Republic of)

2017-04-15

Medical radiation workers are important population to study of chronic low dose radiation exposure and the numbers are continuously increasing worldwide. We have launched a retrospective cohort for medical radiation workers to investigate their health status and to assess the association with occupational radiation exposure. In this first analysis of cancer incidence using data from national dose registry, a number of significant findings at specific cancer sites were observed. Further investigation is needed to assess the association with observed cancer risk and occupational radiation exposure. In this first analysis of cancer incidence using data from national dose registry, a number of significant findings at specific cancer sites were observed.

Frederick National Laboratory's Contribution to ATOM | Frederick National Laboratory for Cancer Research

Science.gov (United States)

As a founding member organization of ATOM, the Frederick National Laboratory will contribute scientific expertise in precision oncology, computational chemistry and cancer biology, as well as support for open sharing of data sets and predictive model

Morbidity in patients with clinically localized prostate cancer managed with non-curative intent. A population-based case-control study

DEFF Research Database (Denmark)

Brasso, K; Friis, S; Juel, K

1999-01-01

clinically localized prostate cancer reported to the Danish Cancer Registry in the period 1977-1992. Morbidity in patients and age-matched controls was extracted from The Danish Hospital Discharge Registry. Admissions were stratified by discharge diagnosis. Overall 4744 patients were hospitalized for 251...

Hydrochlorothiazide use is strongly associated with risk of lip cancer

DEFF Research Database (Denmark)

Pottegård, A; Hallas, J; Olesen, M

2017-01-01

Background: The diuretic hydrochlorothiazide is amongst the most frequently prescribed drugs in the United States and Western Europe, but there is suggestive evidence that hydrochlorothiazide use increases the risk of lip cancer. Objectives: To study the association between use of hydrochlorothia......Background: The diuretic hydrochlorothiazide is amongst the most frequently prescribed drugs in the United States and Western Europe, but there is suggestive evidence that hydrochlorothiazide use increases the risk of lip cancer. Objectives: To study the association between use...... of hydrochlorothiazide and squamous cell carcinoma of the lip. Methods: We conducted a case-control study using Danish nationwide registry data. From the Cancer Registry (2004-2012), we identified 633 case patients with squamous cell carcinoma (SCC) of the lip and matched them to 63 067 population controls using a risk......-set sampling strategy. Hydrochlorothiazide use (1995-2012) was obtained from the Prescription Registry and defined according to cumulative use. Applying conditional logistic regression, we calculated odds ratios (ORs) for SCC lip cancer associated with hydrochlorothiazide use, adjusting for predefined...

Frozen shoulder and risk of cancer

DEFF Research Database (Denmark)

Pedersen, Alma B; Horváth-Puhó, Erzsébet; Ehrenstein, Vera

2017-01-01

BACKGROUND: Frozen shoulder might be a complication or a presenting symptom of cancer. We examined the risk of a cancer diagnosis after an incident diagnosis of frozen shoulder. METHODS: We used prospectively collected data from Danish registries to identify patients with frozen shoulder during 1...

Contribution of Neuroinflammation to the Pathogenesis of Cancer Cachexia

Directory of Open Access Journals (Sweden)

Alessio Molfino

2015-01-01

Full Text Available Inflammation characterizes the course of acute and chronic diseases and is largely responsible for the metabolic and behavioral changes occurring during the clinical journey of patients. Robust data indicate that, during cancer, functional modifications within brain areas regulating energy homeostasis contribute to the onset of anorexia, reduced food intake, and increased catabolism of muscle mass and adipose tissue. In particular, functional changes are associated with increased hypothalamic concentration of proinflammatory cytokines, which suggests that neuroinflammation may represent the adaptive response of the brain to peripheral challenges, including tumor growth. Within this conceptual framework, the vagus nerve appears to be involved in conveying alert signals to the hypothalamus, whereas hypothalamic serotonin appears to contribute to triggering catabolic signals.

Trends in gynecologic cancer among elderly women in Denmark, 1980-2012

DEFF Research Database (Denmark)

Ør Knudsen, Anja; Schledermann, Doris; Nyvang, Gitte-Bettina

2016-01-01

(cancer of the cervix uteri), C54 (corpus uteri cancer), C56 (ovarian cancer) and C57 (Fallopian tube cancer). Data derived from the NORDCAN database with comparable data on cancer incidence, mortality, prevalence and relative survival in the Nordic countries, where the Danish data are delivered from......Background The aim of this analysis was to describe trends in incidence, mortality, prevalence, and survival in Danish women with gynecologic cancer from 1980-2012 comparing women aged 70 years or more with younger women. Material and methods Gynecologic cancers included were ICD-10 codes C53...... the Danish Cancer Registry and the Danish Cause of Death Registry with follow-up for death or emigration until the end of 2013. Results For cervical cancer the incidence decreased among women aged less than 70 years and remained stable among the elderly. The mortality rates were clearly separated by age...

Sanitary surveillance in France in relation with the Chernobylsk accident. Updated situation on thyroid cancers and epidemiological studies during 2006

International Nuclear Information System (INIS)

Belot, A.; Caserio-Schonemann, C.; Cherie-Challine, M.; Colonna, M.; Lacour, B.; Lasalle, J.L.; Leenhardt, L.; Orgiazzi, J.; Pirard, Ph.; Schvartz, C.

2006-01-01

An increase in the incidence of thyroid cancer in children has been reported since 1990 in areas of Belarus, Russia and Ukraine which have been highly contaminated during the Chernobyl accident in 1986. A similar increase is now observed in young adults in the same areas. In France, thyroid cancer is characterized by low occurrence and good prognosis. However, the incidence of thyroid cancer has been increasing for more than 20 years, and in 1986, the Chernobyl cloud of radioactive dust crossed the French territory. Thus, the National institute for public health surveillance (I.n.V.S.) carried out several studies to evaluate whether the incidence increase in thyroid cancer is related to radiation exposure from the Chernobyl accident. Since 2000, the I.n.V.S. is in charge of a national multidisciplinary approach involving a wide range of public health actors, including the French network of cancer registries (Francim). Since 2003, the I.n.V.S. has been working on improving the surveillance system according to the actions described in the national cancer plan 2003-2007. The I.n.V.S. has increased its financial contribution to cancer registries including the national registry of solid tumors in children, which was created in 2000. The Institute is also working on the implementation of a multi source system for the national cancer surveillance in link with cancer registries. For the twentieth anniversary of the Chernobyl accident, the I.n.V.S. is publishing updated results from the latest research conducted in close collaboration with the partners. These results do not support the initial hypothesis of a potential 'Chernobyl effect' in France. The increase in the incidence of thyroid cancer is also reported in most of developed countries. Practices in cancer diagnosis and the increased rate of total thyroidectomy for benign lesion may lead pathologists to unexpectedly discover small thyroid tumors. This fact is likely to explain most of the incidence increase. The wide

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

Science.gov (United States)

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

2017-07-01

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

Findings from the Peutz-Jeghers syndrome registry of Uruguay

KAUST Repository

Tchekmedyian, Asadur

2013-11-19

Background: Peutz-Jeghers syndrome (PJS) is characterized by intestinal polyposis, mucocutaneous pigmentation and an increased cancer risk, usually caused by mutations of the STK11 gene. This study collected epidemiological, clinical and genetic data from all Uruguayan PJS patients. Methods: Clinical data were obtained from public and private medical centers and updated annually. Sequencing of the STK11 gene in one member of each family was performed. Results and discussion: 25 cases in 11 unrelated families were registered (15 males, 10 females). The average age of diagnosis and death was 18 and 41 years respectively. All patients had characteristic PJS pigmentation and gastrointestinal polyps. 72% required urgent surgery due to intestinal obstruction. 3 families had multiple cases of seizure disorder, representing 20% of cases. 28% developed cancer and two patients had more than one cancer. An STK11 mutation was found in 8 of the 9 families analyzed. A unique M136K missense mutation was noted in one family. Comparing annual live births and PJS birth records from 1970 to 2009 yielded an incidence of 1 in 155,000. Conclusion: The Uruguayan Registry for Peutz-Jeghers patients showed a high chance of emergent surgery, epilepsy, cancer and shortened life expectancy. The M136K missense mutation is a newly reported STK 11 mutation. © 2013 Tchekmedyian et al.

Findings from the Peutz-Jeghers syndrome registry of uruguay.

Directory of Open Access Journals (Sweden)

Asadur Tchekmedyian

Full Text Available BACKGROUND: Peutz-Jeghers syndrome (PJS is characterized by intestinal polyposis, mucocutaneous pigmentation and an increased cancer risk, usually caused by mutations of the STK11 gene. This study collected epidemiological, clinical and genetic data from all Uruguayan PJS patients. METHODS: Clinical data were obtained from public and private medical centers and updated annually. Sequencing of the STK11 gene in one member of each family was performed. RESULTS AND DISCUSSION: 25 cases in 11 unrelated families were registered (15 males, 10 females. The average age of diagnosis and death was 18 and 41 years respectively. All patients had characteristic PJS pigmentation and gastrointestinal polyps. 72% required urgent surgery due to intestinal obstruction. 3 families had multiple cases of seizure disorder, representing 20% of cases. 28% developed cancer and two patients had more than one cancer. An STK11 mutation was found in 8 of the 9 families analyzed. A unique M136K missense mutation was noted in one family. Comparing annual live births and PJS birth records from 1970 to 2009 yielded an incidence of 1 in 155,000. CONCLUSION: The Uruguayan Registry for Peutz-Jeghers patients showed a high chance of emergent surgery, epilepsy, cancer and shortened life expectancy. The M136K missense mutation is a newly reported STK 11 mutation.

The database of the Danish Renal Cancer Group

DEFF Research Database (Denmark)

Petersen, Astrid Christine; Søgaard, Mette; Mehnert, Frank

2016-01-01

AIM OF THE DATABASE: The main purpose of the database of the Danish Renal Cancer Group (DaRenCaData) is to improve the quality of renal cancer treatment in Denmark and secondarily to conduct observational research. STUDY POPULATION: DaRenCaData includes all Danish patients with a first......-time diagnosis of renal cancer in the Danish National Pathology Registry since August 1, 2010. MAIN VARIABLES: DaRenCaData holds data on demographic characteristics, treatments, and pathology collected through linkage to central registries and online registration of a few clinical key variables. Eight quality...... indicators have been selected for monitoring treatment quality and outcome after renal cancer. DESCRIPTIVE DATA: The incidence of renal cancer in Denmark has increased from 12.7 per 100,000 population-years in 2010-2011 to 15.9 per 100,000 population-years in 2014-2015. A total of 3,977 Danish patients...

Cancer of the thyroid and 131I fallout in Norway

International Nuclear Information System (INIS)

Oftedal, P.; Lund, E.

1983-01-01

From 1953 to 1962 Norway received relatively high levels of radioactive fallout. On the basis of extensive measurements in air, precipitation, food and humans, the dose to the thyroid due to 131 I has been calculated. Cancer registration in Norway is practically completely efficient because of obligatory notification of the Cancer Registry by physicians, pathology laboratories, and the Central Bureau of Statistics of all cases or death certificates concerning cancer. Analysis of the Cancer Registry data from 1953 to 1980 concerning birth cohorts 1936 to 1961 indicates an overall increasing trend in thyroid cancer morbidity, most pronounced in female cohorts born 1930-50. The highest, most abrupt irregularities reveal a coincidence of high numbers with high 131 I content in milk consumed during the years of prepuberty and puberty. Possible interpretations are discussed. (author)

Changes in the management and comorbidities of acromegaly over three decades: the French Acromegaly Registry.

Science.gov (United States)

Maione, Luigi; Brue, Thierry; Beckers, Albert; Delemer, Brigitte; Petrossians, Patrick; Borson-Chazot, Françoise; Chabre, Olivier; François, Patrick; Bertherat, Jérôme; Cortet-Rudelli, Christine; Chanson, Philippe

2017-05-01

Acromegaly is a rare disease associated with chronic multisystem complications. National registries have been created in several countries. The French Registry contains data on acromegaly epidemiology, management and comorbidities recorded over more than three decades, retrospectively until 1999 and prospectively from 1999 to 2012. Data could be analyzed for 999 of the 1034 patients included in the registry (46% males). Disease control, defined as IGF-I normalization (adjusted for age and sex), was achieved in 75% of patients at the last follow-up visit. Half the patients with uncontrolled disease had IGF-I levels below 1.5 times the upper limit of normal (ULN). The proportion of patients with surgically cured disease did not change markedly over time, whereas the proportion of patients with uncontrolled disease fell and the proportion of patients with medically controlled disease rose. Cardiovascular, metabolic, respiratory and rheumatologic comorbidities and their outcomes were recorded for most patients, and no noteworthy overall deterioration was noted over time. Cancer occurred in 10% of patients, for a standardized incidence ratio of 1.34 (95% CI: 0.94-1.87) in men and 1.24 (0.77-1.73) in women. Forty-one patients died during follow-up, for a standardized mortality ratio of 1.05 (0.70-1.42). Most deaths were due to cancer. The majority of patients with acromegaly now have successful disease control thanks to the multistep management. The incidence of comorbidities following diagnosis of acromegaly is very low. Life expectancy is now close to that of the general population, probably owing to better management of the GH/IGF-I excess and comorbidities. © 2017 European Society of Endocrinology.

Genetics Home Reference: bladder cancer

Science.gov (United States)

... Testing Registry: Malignant tumor of urinary bladder Other Diagnosis and Management Resources (1 link) MedlinePlus Encyclopedia: Bladder Cancer General Information from MedlinePlus (5 links) Diagnostic Tests ...

Cancer distribution pattern in south-western Nigeria | Awodele ...

African Journals Online (AJOL)

The burden of cancer in Nigeria is appreciable with about 100,000 new cancer cases been reported in the country each year. This study aimed to determine the level of occurrence and pattern of distribution of different cancer types in two major functional cancer registries in south-western Nigeria. A desk review of the level ...

Danish Hip Arthroscopy Registry (DHAR)

DEFF Research Database (Denmark)

Lund, Bent; Mygind-Klavsen, Bjarne; Grønbech Nielsen, Torsten

2017-01-01

The Danish Hip Arthroscopy Registry (DHAR) was initiated in January 2012 as a web-based prospective registry. The purpose of this study was to evaluate and report the first registry based outcome data of a national population with radiological and clinical femoroacetabular impingement (FAI......) undergoing hip arthroscopic treatment. Our primary hypothesis was that patients undergoing hip arthroscopy would improve significantly in pain, quality of life and sports related outcome measurements in Patient Related Outcome Measures (PROM). Peri-operative data and Patient Reported Outcome Measures (PROM......-5 D demonstrated improvement after 1 and 2 years from 0.66 pre-op to 0.78 at 2 years. HSAS improved significantly from 2.5 to 3.3. Pain score data demonstrated improvement in NRS-rest 39 to 17 and NRS Walk 49 to 22 at follow-up. We conclude that patients with FAI undergoing hip arthroscopy...

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

Science.gov (United States)

Jessica Call; Jennifer Hayes

2007-01-01

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

Agency for Toxic Substances and Disease Registry

Science.gov (United States)

... Z # Search Form Controls Search The CDC submit Agency for Toxic Substances and Disease Registry Note: Javascript ... gov . Recommend on Facebook Tweet Share Compartir The Agency for Toxic Substances and Disease Registry (ATSDR) , based ...

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

Science.gov (United States)

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

2017-09-01

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

Breast cancer in the Czech Republic

International Nuclear Information System (INIS)

Hodacova, L.

2003-01-01

Background. Malignant neoplasms present one of the most serious chapters of morbidity, mortality, and the overall perspective of the health status of Czech population. Malignant neoplasms have been registered in the Czech Republic since the end of the 1950s. Guarantor of the all-state registry is the Institute of Health Information and Statistics of the Czech Republic (IHIS CR), and conceptual and methodological steering is performed by the Council of the Czech Cancer Registry. The five most frequently diagnoses in Czech males and seven most frequently diagnoses in Czech females were followed during the last 20 years. The most frequent malignant neoplasm in Czech women is breast cancer. Conclusions. The incidence of this cancer has increased by 75% during the studied period. During the year 2001, three pilot studies of preventive mammography screening were done in the country. One case of asymptomatic breast cancer in the study costs 80,000 Kc (in reality it was 120,000 K.). These costs are markedly lower than the combined therapy of advanced stages of breast cancer. (author)

Mismatch repair status and synchronous metastases in colorectal cancer

DEFF Research Database (Denmark)

Nordholm-Carstensen, Andreas; Krarup, Peter-Martin; Morton, Dion

2015-01-01

The causality between the metastatic potential, mismatch repair status (MMR) and survival in colorectal cancer (CRC) is complex. This study aimed to investigate the impact of MMR in CRC on the occurrence of synchronous metastases (SCCM) and survival in patients with SCCM on a national basis....... A nationwide cohort study of 6,692 patients diagnosed with CRC between 2010 and 2012 was conducted. Data were prospectively entered into the Danish Colorectal Cancer Group's database and merged with data from the Danish Pathology Registry and the National Patient Registry. Multivariable and multinomial...

Disease management for chronic skin cancer

NARCIS (Netherlands)

S. van der Geer-Rutten (Simone)

2012-01-01

textabstractWorldwide non-melanoma skin cancer (NMSC) is a rapidly rising problem. In this thesis we show that an enormous gap exists between the official first primary figures available at cancer registries and the actual burden in a dermatology practice. NMSC needs to be regarded as a chronic

The Western Denmark Cardiac Computed Tomography Registry

DEFF Research Database (Denmark)

Nielsen, Lene Hüche; Nørgaard, Bjarne Linde; Tilsted, Hans-Henrik

2014-01-01

BACKGROUND: As a subregistry to the Western Denmark Heart Registry (WDHR), the Western Denmark Cardiac Computed Tomography Registry (WDHR-CCTR) is a clinical database established in 2008 to monitor and improve the quality of cardiac computed tomography (CT) in Western Denmark. OBJECTIVE: We...... examined the content, data quality, and research potential of the WDHR-CCTR. METHODS: We retrieved 2008-2012 data to examine the 1) content; 2) completeness of procedure registration using the Danish National Patient Registry as reference; 3) completeness of variable registration comparing observed vs...

Correlating Orphaned Windows Registry Data Structures

Directory of Open Access Journals (Sweden)

Damir Kahved

2009-06-01

Full Text Available Recently, it has been shown that deleted entries of the Microsoft Windows registry (keys may still reside in the system files once the entries have been deleted from the active database. Investigating the complete keys in context may be extremely important from both a Forensic Investigation point of view and a legal point of view where a lack of context can bring doubt to an argument. In this paper we formalise the registry behaviour and show how a retrieved value may not maintain a relation to the part of the registry it belonged to and hence lose that context. We define registry orphans and elaborate on how they can be created inadvertently during software uninstallation and other system processes. We analyse the orphans and attempt to reconstruct them automatically. We adopt a data mining approach and introduce a set of attributes that can be applied by the forensic investigator to match values to their parents. The heuristics are encoded in a Decision Tree that can discriminate between keys and select those which most likely owned a particular orphan value.

The burden of rare cancers in Italy: the surveillance of rare cancers in Italy (RITA) project.

Science.gov (United States)

Trama, Annalisa; Mallone, Sandra; Ferretti, Stefano; Meduri, Francesca; Capocaccia, Riccardo; Gatta, Gemma

2012-01-01

The project Surveillance of rare cancers in Italy (RITA) provides, for the first time, estimates of the burden of rare cancers in Italy based on the list of rare cancers proposed in collaboration with the European project Surveillance of Rare Cancers in Europe (RARECARE). RITA analyzed data from Italian population-based cancer registries (CR). The period of diagnosis was 1988 to 2002, and vital status information was available up to December 31, 2003. Incidence rates were estimated for the period 1995-2002, survival for the years 2000-2002 (with the period method of Brenner), and complete prevalence at January 1, 2003. Rare cancers are those with an incidence <6/100,000/year. In Italy, every year there are 60,000 new diagnoses of rare cancers corresponding to 15% of all new cancer diagnoses. Five-year relative survival was on the average worse for rare cancers (53%) than for common cancers (73%). A total of 770,000 patients were living in Italy in 2008 with a diagnosis of a rare cancer, 22% of the total cancer prevalence. Our estimates constitute a useful base for further research and support the idea that rare cancers are a public health problem that deserves attention. Centers of expertise for rare cancers that pool cases, expertise and resources could ensure an adequate clinical management for these diseases. Our data also showed that cancer registries are suitable sources of data to estimate incidence, prevalence and survival for rare cancers and should continue to monitoring rare cancers in Italy.

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

OpenAIRE

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

2016-01-01

Background We investigated the feasibility of using an online registry to provide prevalence data for multiple orphan lung diseases in Australia and New Zealand. Methods 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 s...

United States Transuranium and Uranium Registries

International Nuclear Information System (INIS)

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

1991-06-01

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

The Potential Contribution of BRCA Mutations to Early Onset and Familial Breast Cancer in Uzbekistan.

Science.gov (United States)

Abdikhakimov, Abdulla; Tukhtaboeva, Mukaddas; Adilov, Bakhtiyar; Turdikulova, Shahlo

2016-01-01

Breast cancer is the most common malignancy in women and affects approximately 1 out of 8 females in the US. Risk of developing breast cancer is strongly influenced by genetic factors. Germ-line mutations in BRCA1 and BRCA2 genes are associated with 5-10% of breast cancer incidence. To reduce the risk of developing cancer and to increase the likelihood of early detection, carriers of BRCA1 or BRCA2 mutations are offered surveillance programs and effective preventive medical interventions. Identification of founder mutations of BRCA1/2 in high risk communities can have a significant impact on the management of hereditary cancer at the level of the national healthcare systems, making genetic testing more affordable and cost-effective. BRCA1 and BRCA2 mutations in breast cancer patients have not been characterized in the Uzbek population. This pilot study aimed to investigate the contribution of BRCA1 and BRCA2 mutation to early onset and familial cases of breast cancer in Uzbekistan. A total of 67 patients with breast cancer and 103 age-matched disease free controls were included in this study. Utilizing SYBR Green based real-time allele-specific PCR, we have analyzed DNA samples of patients with breast cancer and disease free controls to identify the following BRCA1 and BRCA2 mutations: BRCA1 5382insC, BRCA1 4153delA, BRCA1 185delAG, BRCA1 300T>G, BRCA2 6174delT. Three unrelated samples (4.5%) were found to be positive for the heterozygous 5382insCBRCA1 mutation, representing a possible founder mutation in the Uzbek population, supporting the need for larger studies examining the contribution of this mutation to breast cancer incidence in Uzbekistan. We did not find BRCA1 4153delA, BRCA1 185delAG, BRCA1 300T>G, and BRCA2 6174delT mutations. This preliminary evidence suggests a potential contribution of BRCA1 5382insC mutation to breast cancer development in Uzbek population. Taking into account a high disease penetrance in carriers of BRCA1 mutation, it seems

Low-dose aspirin use and the risk of ovarian cancer in Denmark

DEFF Research Database (Denmark)

Baandrup, Lone; Kjaer, S K; Olsen, J H

2015-01-01

BACKGROUND: A comprehensive body of evidence has shown that aspirin has cancer-preventive effects, particularly against gastrointestinal cancer, but its effects on the risk of ovarian cancer are less well established. This nationwide case-control study examined the association between low......-dose aspirin and the risk of ovarian cancer. PATIENTS AND METHODS: We identified all patients in the Danish Cancer Registry aged 30-84 years old with a histologically verified first diagnosis of epithelial ovarian cancer during 2000-2011. Each patient was sex- and age-matched to 15 population controls using...... risk-set sampling. Prescription use, comorbidity, reproductive history, and demographic characteristics data were obtained from nationwide registries. The use of low-dose (75-150 mg) aspirin was defined according to the dose as well as the duration and consistency of use. Conditional logistic...

[Analysis of cancer incidence and mortality in elderly population in China, 2013].

Science.gov (United States)