scholarly journals Improving the usability and utilization of cancer registry data : the need to identify a core data set

2012 ◽  
Author(s):  
◽  
Iris Zachary
Keyword(s):  
Public Health ◽  
Data Collection ◽  
Cancer Registry ◽  
Data Use ◽  
Cancer Registries ◽  
Cancer Surveillance ◽  
Registry Data ◽  
Data Standards ◽  
Cancer Data ◽  
Cancer Registry Data

Cancer registries in the US and Canada have a long history of data standards and data collection that have developed from a minimal dataset to the standard dataset that is used now. Central Cancer Registries (CCRs) are good resources for cancer data, but are often underutilized. CCRs are recognized for high quality data standards by the Centers for Disease Control and Prevention (CDC) National Program of Cancer Registries (NPCR) or the National Cancer Institute (NCI) Surveillance, Epidemiology, and End Results (SEER) Program and receive certification from the North American Association of Central Registries (NAACCR). Each year, there are many changes to the data that are collected in the cancer registry field. Standards, requirements, and medical knowledge change frequently. The changes in the data collection process cause interference and decrease in quality of data fields, but also delays in the timely collection of cancer registry data. The objective of this study is to identify what essentially needs to be collected and what can be collected optionally in a cancer registry. The goal is a robust dataset that can be used for other disease registries, cancer data surveillance, public health, and research. CCRs and Cancer Centers (CR) were surveyed to identify and describe the data items that are collected and needed to achieve a dataset that can serve cancer surveillance and research. The surveys were analyzed to identify overlaps of common and special interests, as well as barriers. The results showed that cancer registries have data available, but need to look at the timely release of a core dataset for use in cancer surveillance and research. The surveys also evaluated the barriers to data use from cancer registries and barriers for data use of collected datasets to identify the initial data request process. Data in the cancer registry are in a format that can easily be adopted by public health, surveillance, and research. The requesting process needs to be accessible, understandable, and streamlined to enable successful use of the data.

scholarly journals Information Management in Cancer Registries: Evaluating the Needs for Cancer Data Collection and Cancer Research

2015 ◽  
Vol 7 (2) ◽  
Author(s):  
Iris Zachary ◽  
Suzanne A Boren ◽  
Eduardo Simoes ◽  
Jeannette Jackson-Thompson ◽  
J. Wade Davis ◽  
...  
Keyword(s):  
Public Health ◽  
Data Collection ◽  
Cancer Registry ◽  
Cancer Registries ◽  
Registry Data ◽  
Data Set ◽  
Common Data Elements ◽  
Cancer Registry Data ◽  
Treatment Data ◽  
Data Elements

Cancer registry data collection involves, at a minimum, collecting data on demographics, tumor characteristics, and treatment. A common, identified, and standardized set of data elements is needed to share data quickly and efficiently with consumers of this data. This project highlights the fact that, there is a need to develop common data elements; Surveys were developed for central cancer registries (CCRs) and cancer researchers (CRs) at NCI-designated Cancer Centers, in order to understand data needs. Survey questions were developed based on the project focus, an evaluation of the research registries and database responses, and systematic review of the literature. Questions covered the following topics: 1) Research, 2) Data collection, 3) Database/ repository, 4) Use of data, 5) Additional data items, 6) Data requests, 7) New data fields, and 8) Cancer registry data set. A review of the surveys indicates that all cancer registries’ data are used for public health surveillance, and 96% of the registries indicate the data are also used for research. Data are available online in interactive tables from over 50% of CRs and 87% of CCRs. Some other survey responses indicate that CCR treatment data are not complete for example treatment data, however cancer researchers are interested in treatment variables from CCRs. Cancer registries have many data available for review, but need to examine what data are needed and used by different entities. Cancer Registries can further enhance usage through collaborations and partnerships to connect common interests in the data by making registries visible and accessible.Keywords: Public Health; Disease Registries; Disease Reporting

Use of State Cancer Surveillance Data to Estimate the Cancer Burden in Disaster Affected Areas–Hurricane Katrina, 2005

2007 ◽  
Vol 22 (4) ◽  
pp. 282-290 ◽  
Author(s):  
Djenaba A. Joseph ◽  
Phyllis A. Wingo ◽  
Jessica B. King ◽  
Lori A. Pollack ◽  
Lisa C. Richardson ◽  
...  
Keyword(s):  
Hurricane Katrina ◽  
Cancer Patients ◽  
Cancer Registry ◽  
Cancer Registries ◽  
Incidence Rates ◽  
Cancer Surveillance ◽  
Registry Data ◽  
Specific Calculation ◽  
Cancer Burden ◽  
Cancer Registry Data

AbstractPurpose:The objective of this study was to estimate the burden of cancer in counties affected by Hurricane Katrina using population-based cancer registry data, and to discuss issues related to cancer patients who have been displaced by disasters.Methods:The cancer burden was assessed in 75 counties in Louisiana, Alabama, and Mississippi that were designated by the Federal Emergency Management Agency as eligible for individual and public assistance. Data from the National Program of Cancer Registries were used to determine three-year average annual age-adjusted incidence rates and case counts during the diagnosis years 2000–2002 for Louisiana and Alabama. Expected rates and counts for the most-affected counties in Mississippi were estimated by direct, age-specific calculation using the 2000–2002 county level populations and the site-, sex-, race-, and age-specific cancer incidence rates for Louisiana.Results:An estimated 23,549 persons with a new diagnosis of cancer in the past year resided in the disaster-affected counties. Fifty-eight percent of the cases were cancers of the lung/bronchus, colon/rectum, female breast, and prostate. Eleven of the top 15 cancer sites by sex and black/white race in disaster counties had >50% of cases diagnosed at the regional or distant stage.Conclusions:Sizable populations of persons with a recent cancer diagnosis were potentially displaced by Hurricane Katrina. Cancer patients required special attention to access records in order to confirm diagnosisand staging, minimize disruption in treatment, and ensure coverage of care. Cancer registry data can be used to provide disaster planners and clinicians with estimates of the number of cancer patients, many of whom maybe undergoing active treatment.

scholarly journals Utility and Generalizability of Multistate, Population-Based Cancer Registry Data for Rural Cancer Surveillance Research in the United States

2018 ◽  
Vol 27 (11) ◽  
pp. 1252-1260 ◽  
Author(s):  
Whitney E. Zahnd ◽  
Wiley D. Jenkins ◽  
Aimee S. James ◽  
Sonya R. Izadi ◽  
David E. Steward ◽  
...  
Keyword(s):  
United States ◽  
Cancer Registry ◽  
The United States ◽  
Population Based ◽  
Cancer Surveillance ◽  
Registry Data ◽  
Cancer Registry Data

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

Cancer ◽  
2017 ◽  
Vol 123 ◽  
pp. 4969-4976 ◽  
Author(s):  
Mary C. White ◽  
Frances Babcock ◽  
Nikki S. Hayes ◽  
Angela B. Mariotto ◽  
Faye L. Wong ◽  
...  
Keyword(s):  
Public Health ◽  
United States ◽  
Cancer Registry ◽  
Cancer Control ◽  
The United States ◽  
Registry Data ◽  
Control Programs ◽  
Cancer Registry Data

scholarly journals Web-based interactive mapping from data dictionaries to ontologies, with an application to cancer registry

2020 ◽  
Vol 20 (S10) ◽  
Author(s):  
Shiqiang Tao ◽  
Ningzhou Zeng ◽  
Isaac Hands ◽  
Joseph Hurt-Mueller ◽  
Eric B. Durbin ◽  
...  
Keyword(s):  
Cancer Registry ◽  
Data Entry ◽  
Cancer Registries ◽  
The State ◽  
Registry Data ◽  
Data Dictionary ◽  
Web Based ◽  
Cancer Registry Data ◽  
Interactive Mapping ◽  
Data Elements

Abstract Background The Kentucky Cancer Registry (KCR) is a central cancer registry for the state of Kentucky that receives data about incident cancer cases from all healthcare facilities in the state within 6 months of diagnosis. Similar to all other U.S. and Canadian cancer registries, KCR uses a data dictionary provided by the North American Association of Central Cancer Registries (NAACCR) for standardized data entry. The NAACCR data dictionary is not an ontological system. Mapping between the NAACCR data dictionary and the National Cancer Institute (NCI) Thesaurus (NCIt) will facilitate the enrichment, dissemination and utilization of cancer registry data. We introduce a web-based system, called Interactive Mapping Interface (IMI), for creating mappings from data dictionaries to ontologies, in particular from NAACCR to NCIt. Method IMI has been designed as a general approach with three components: (1) ontology library; (2) mapping interface; and (3) recommendation engine. The ontology library provides a list of ontologies as targets for building mappings. The mapping interface consists of six modules: project management, mapping dashboard, access control, logs and comments, hierarchical visualization, and result review and export. The built-in recommendation engine automatically identifies a list of candidate concepts to facilitate the mapping process. Results We report the architecture design and interface features of IMI. To validate our approach, we implemented an IMI prototype and pilot-tested features using the IMI interface to map a sample set of NAACCR data elements to NCIt concepts. 47 out of 301 NAACCR data elements have been mapped to NCIt concepts. Five branches of hierarchical tree have been identified from these mapped concepts for visual inspection. Conclusions IMI provides an interactive, web-based interface for building mappings from data dictionaries to ontologies. Although our pilot-testing scope is limited, our results demonstrate feasibility using IMI for semantic enrichment of cancer registry data by mapping NAACCR data elements to NCIt concepts.

scholarly journals Creating a Single Application and Approval Process to Enable Research; an example using CPRD Primary Care Data and Public Health England Cancer Registry Data

2017 ◽  
Vol 1 (1) ◽  
Author(s):  
Sophia Amjad ◽  
Rachael Williams ◽  
Rachael Brannan ◽  
Tariq Malik ◽  
Janet Valentine
Keyword(s):  
Public Health ◽  
Primary Care ◽  
Cancer Registry ◽  
Registry Data ◽  
Cancer Registration ◽  
Clinical Practice Research Datalink ◽  
Approval Process ◽  
Single Application ◽  
Cancer Registry Data ◽  
Data Controller

ABSTRACTObjectivesTo enhance the research value and capability of its primary care database, the Clinical Practice Research Datalink (CPRD) has collaborated with Public Health England (PHE)’s National Cancer Registration and Analysis Service to facilitate access to linked cancer registration data for use in research, pharmacovigilance, drug monitoring and health outcomes analysis. Since 2009, access to this linked resource has been co-managed by CPRD and PHE, through two parallel, independent approvals processes: (a) the MHRA Independent Scientific Advisory Committee (ISAC) and (b) the PHE Office for Data Release (ODR). In upholding the Office for Life Science Ministerial Industry Strategy Group (Health Data Programme)’s vision to minimise process barriers to accessing real world data, CPRD and PHE have worked together to unify and streamline these two processes into a single end-to-end application and approval process. ApproachEach organisation reviewed each other’s approval processes to achieve an improved mutual understanding of the respective organisation’s governance approach, the risk based assessments applied to disclosure risk, risk appetites and policies, with the goal to harmonise these into a single approval process. ResultsCPRD and PHE are finalising a contract establishing a clear operating framework allowing CPRD to grant approval to researchers for the use of linked cancer registry data. The contract names CPRD as a joint data controller and sets out the purposes for processing, the manner of processing and the means by which joint data controller responsibilities will be satisfied. An associated service level agreement is in discussion which will enable robust timelines and performance management for both organisations. These developments are important milestones towards achieving the single approval process by allowing CPRD to review applications for cancer registry data in-house, simultaneously to the ISAC review. ConclusionThe strong relationship built between CPRD and PHE, and willingness to develop a single application and approval process, will strengthen and streamline access to these data, whilst assuring patients and the public that scientific integrity is maintained and proportionate information governance checks are in place. Upon completion of this work, applicants will experience associated faster review and feedback time, ultimately leading to faster approvals. Researchers wishing to utilise these linked data will soon be able to submit one application to ISAC, have one point of contact and one approval.

CLL/SLL Is More Common Than Registry Incidence Suggests: A Population-Based Study in Manitoba, Canada.

Blood ◽  
2005 ◽  
Vol 106 (11) ◽  
pp. 1334-1334 ◽  
Author(s):  
Matthew D. Seftel ◽  
Donna Hewitt ◽  
Hui Zhang ◽  
Donna Turner ◽  
Spencer Gibson ◽  
...  
Keyword(s):  
Flow Cytometry ◽  
Cancer Registry ◽  
Census Data ◽  
Tertiary Care ◽  
Cancer Registries ◽  
Population Based ◽  
Lymphocytic Leukemia ◽  
Registry Data ◽  
Population Based Study ◽  
Cancer Registry Data

Abstract Background: The exact incidence of chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL) is unknown. In the appropriate clinical setting, peripheral blood immunophenotyping is often sufficient for diagnosis. Cancer registries that rely only on histological or cytological reporting may inaccurately estimate the incidence of CLL/SLL. The province of Manitoba, with a population of 1.2 million people, has a centralized flow cytometry service as well as a provincial cancer registry. We thus had the opportunity to use these large databases to describe the demographic and clinical patterns of CLL/SLL. This has enabled us to test the hypothesis that registry data underestimates the incidence of this disease. Methods: All patients diagnosed with CLL/SLL between January 1, 1998 and December 31, 2003 were obtained from the Manitoba cancer registry and the central flow cytometry database. Additional clinical characteristics were obtained from a chart review. Results: 491 patients were diagnosed by flow cytometry. In contrast, cancer registry data reported 345 patients with CLL/SLL, 131 (38%) of which were diagnosed in tertiary care centres. Thus, 146 (30%) patients were not known to the provincial cancer registry. Median age of pts was 71 years (range, 24–97). Based on 2001 Canadian census data, the crude incidence of CLL/SLL in Manitoba is estimated to be 7 per 100 000 persons. Other demographic and clinical data of this population-based study will be presented. Conclusion: By incorporating diagnostic immunophenotyping, the incidence of CLL/SLL appears to be higher than that reported by a large Canadian cancer registry. This observation may apply to other local and national jurisdictions, and should be studied further.

scholarly journals Quality of Cancer Registry Data: Botswana Experience, Demonstrating Improvements Over Time

2016 ◽  
Vol 2 (3_suppl) ◽  
pp. 43s-43s
Author(s):  
Malebogo Pusoentsi ◽  
Bame P. Shatera ◽  
Setlogelo Motlogi ◽  
Tuduetso Monagen ◽  
Neo Tapela ◽  
...  
Keyword(s):  
Data Quality ◽  
Cancer Registry ◽  
Death Certificate ◽  
Kaposi Sarcoma ◽  
Cancer Registries ◽  
Health Systems Strengthening ◽  
Registry Data ◽  
Cancer Registry Data ◽  
Over Time

Abstract 69 Background: One of the challenges to addressing the growing burden of cancer in low- and middle-income countries is insufficient data and limitations in quality of cancer registries. The Botswana National Cancer Registry (BNCR), first established in 1999, is an IARC-endorsed population-based registry covering a population of 2.1 million. Here we assess BNCR's data quality over time. Methods: We conducted a retrospective review of BNCR data that was collected between January 1, 2005 and December 31, 2010. We assessed basis of cancer diagnosis, as well as key data quality indices (completeness, consistency, uniqueness, and accuracy) over two time periods: 2005–2007 and 2008–2010. We assessed cancer incidence and distribution during this time period, and reviewed Botswana Ministry of Health operational documents to identify major health care initiatives that may have had a bearing on cancer registry data quality. Results: In total, 8,938 cancer cases were registered 2005-2010. Kaposi sarcoma was the most commonly diagnosed cancer (n=1766, 19.4%), followed by cervical cancer (n=1252, 13.8%) and then breast cancer (n=801, 8.8%). During 2005-2007, 79% of all cancers were morphologically verified and 6% of were verified by death certificate alone. By 2008-2010, 89% of cancers were morphologically verified while none (0%) were verified by death certificate alone. There was a marked difference for basis of Kaposi sarcoma diagnosis (26% in 2005-2007, 43.8% 2008-2010), which changed from mainly clinical to pathology-based diagnosis. Factors that have contributed to this improvement include targeted initiatives such as clinician training, as well as broader health system developments such as general laboratory diagnostic capacitation that has facilitated use of histopathology services for cancer. Conclusion: BNCR data quality has improved over the years. These improvements enhance utility of cancer registry data for healthcare planning, and highlight the merit of cross-cutting health systems strengthening developments. This assessment, and the initiatives that have contributed to BNCR data improvement may be relevant to cancer registries in similar settings. AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST: No COIs from the authors.

Ascertainment and evaluation of interval cancers in population-based mammography screening programmes: a collaborative study in four European centres

2005 ◽  
Vol 12 (1) ◽  
pp. 43-49 ◽  
Author(s):  
Sven Törnberg ◽  
Mary Codd ◽  
Vitor Rodrigues ◽  
Nereo Segnan ◽  
Antonio Ponti
Keyword(s):  
Health Care ◽  
Cancer Registry ◽  
Mammography Screening ◽  
Breast Cancer Incidence ◽  
Collaborative Study ◽  
Interval Cancer ◽  
Cancer Registries ◽  
Population Based ◽  
Registry Data ◽  
Cancer Registry Data

Objectives: The purpose of the present study was to estimate the interval cancer (IC) rates in four population-based mammography screening programmes in four countries with different health-care environments, different access to cancer registry data, and different age groupsof women invited. Setting: The screening programmes in Coimbra (Portugal), Dublin (Ireland), Stockholm (Sweden), and Turin (Italy) participated in the study. Methods: All cancer cases were searched for in cancer registries. IC rates and other outcome measures from the screeningprogrammes were estimated and compared between the centres. Poisson regression model was used to estimate the proportional incidence based on IC rate in relation to expected total breast cancer incidence rate in the absence of screening. Results: There was a more than tenfold difference inthe number of invited women at the first round between the involved centres. The IC rates varied between 4.3 and 23.8 per 10,000 women screened. The levels of IC rates in relation to the estimated background incidence varied from 0.35 up to 0.46 depending on age groups involved in the programme,but did not differ significantly between three of the four involved centres. Conclusions: IC rates were quite similar between three of the four centres despite the differences in target population, invited ages, length of building-up of the programmes and different health-care organizations.Different access to complete cancer registry data is likely to explain the lower IC rates in the fourth centre.

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