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.

scholarly journals Proportions of Cancer Cases in Primary Care, Hospital, and Cancer Registry Data Among Patients Treated for Overactive Bladder

Epidemiology ◽  
2019 ◽  
Vol 30 (2) ◽  
pp. e8-e9
Author(s):  
Andrea V. Margulis ◽  
Joan Fortuny ◽  
James A. Kaye ◽  
Brian Calingaert ◽  
Maria Reynolds ◽  
...  
Keyword(s):  
Primary Care ◽  
Overactive Bladder ◽  
Cancer Registry ◽  
Registry Data ◽  
Care Hospital ◽  
Cancer Registry Data ◽  
Primary Care Hospital

scholarly journals Increase Coverage Cancer Registry by Strengthening and Improving the Reporting of Breast Cancer Screening Program in Jakarta as One of Data Source

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 142s-142s ◽  
Author(s):  
D.T. Sinulingga ◽  
A. Kadir ◽  
D. Purwanto ◽  
K. Kardinah ◽  
E. Suzanna ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Early Detection ◽  
Cancer Registry ◽  
Registry Data ◽  
Cancer Registration ◽  
Birth Date ◽  
Screening Programs ◽  
Cancer Registry Data ◽  
Mobile Mammography ◽  
Data Source

Background and context: Breast cancer screening programs by mobile mammography have been done since 2005 for Jakarta and around by collaboration of Dharmais National Cancer Center with The Indonesia Breast Cancer Foundation and Jakarta Health Department. Every activity, mobile mammography has been examined 50 persons for 60-80 times yearly. For 2015 there were 3493 examinations with 529 cases (15.1%) were abnormal which 43 from that cases (8.1%) are suspect malignancy. All that data were compile with early detection and cancer registry data to know the real cancer, but there were no malignancy and only 15 benign cases had come to follow-up to Dharmais NCC. The result is no malignancy. To compile the mobile mammography data with detection unit and cancer registry data were difficult because of the difference terms of the variables. National Cancer Registry of Indonesia has been announced by Ministry of Health since 2016. The coverage of cancer that diagnosed in 2008-2012 in Jakarta just 30.7%. One of the sources of data are screening data. In Indonesia, screening programs for breast and cervix cancer have been done sporadically, including at Jakarta. Unfortunately for 2008-2012 diagnose year, there were no data can compile to cancer registry because there were no address data and name. So we collaborate to improve the data variables for cancer registration system. Aim: To conduct the mobile mammography screening data as one of the sources data for cancer registration to improve the coverage in Jakarta and to prepare the breast specific cancer registry system. Strategy/Tactics: Cancer Registry, Early Detection, Radiology and Pathology Unit was collaborating with The Indonesia Breast Cancer Foundation to improve the variables. Program/Policy process: We to improve the variables and their operational definition especially for name, address and birth date include risk factors and physical examinations variables. The palpations of breast was conduct by midwives or doctors before the examination with mammography. Cancer registration variables definition is the standard, so the name variable is the name that written in the National Identity Card, include the birth date and address. Information system department in Dharmais NCC has made the program to this data system and have been take place since July 2017. Outcomes: There were 1462 data that have been in hospital data based for mobile mammography with 237 cases (16.2%) were abnormal which 14 cases (5.9%) are suspect malignancy. Only 5 suspect malignancy cases had more examination in Dharmais NCC and all of them were diagnosed breast malignancy. What was learned: Standardization of variable definitions is very important for cancer registry data source to improve the coverage especially for early stage finding cases. But to know the standard diagnose and to follow the cases real conditions, we have to make a good and clear referral system networking.

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 A COMPARISON OF THE CANCER INCIDENCE RATES BETWEEN THE STATE CANCER STATISTICS AND CANCER REGISTRY DATA IN THE RUSSIAN FEDERATION

2019 ◽  
Vol 18 (5) ◽  
pp. 5-11
Author(s):  
G. V. Petrova ◽  
O. P. Gretsova ◽  
V. V. Starinsky
Keyword(s):  
Cancer Registry ◽  
Cancer Incidence ◽  
Incidence Rates ◽  
The State ◽  
Registry Data ◽  
Cancer Registration ◽  
Registration System ◽  
Cancer Statistics ◽  
Cancer Registry Data ◽  
Cancer Incidence Rates

The purpose of the study was to compare data on the cancer incidence rates for 2016 between the official reports on cancer statistics and federal cancer registry, collected in December 2018.Material and Methods. The study estimated the total data on 18 parameters from 35 regions of Russia, covering 66.3 million people (2016). The database of the Russian cancer registry and the database containing reports on the state cancer statistics were used. The cancer statistics/cancer registry ratio was assessed.Results. No differences in cancer incidence between the official reports on cancer statistics and cancer registry data were found. In the official reports on cancer statistics, the mortality rate, the proportion of posthumously recorded patients per 100 newly diagnosed, the proportion of deaths from diseases not related to cancer per 100 deceased patients, the cancer prevalence and the prevalence rate of unspecified malignant tumors were slightly reduced (to 10 %, 9 %, 5 %, and 4 %, respectively), and the rate of cancer detection, the proportion of histologically verified diagnoses and the proportion of cancers detected in stage III were increased (to 19 %, 10 % and 14 %, respectively) compared to those in cancer registry data.Conclusion. Improvement in the quality and completeness of information about cancer patients is associated rather with increasing the annual report length than with the need to improve the cancer registration system itself.

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

scholarly journals Proportions of cancer cases in primary care, hospital, and cancer registry data among patients treated for overactive bladder

Epidemiology ◽  
2018 ◽  
pp. 1
Author(s):  
Andrea V Margulis ◽  
Joan Fortuny ◽  
James A Kaye ◽  
Brian Calingaert ◽  
Maria Reynolds ◽  
...  
Keyword(s):  
Primary Care ◽  
Overactive Bladder ◽  
Cancer Registry ◽  
Registry Data ◽  
Care Hospital ◽  
Cancer Registry Data ◽  
Primary Care Hospital

scholarly journals Data from Population-based Cancer Registration for Secondary Data Analysis: Methodological Challenges and Perspectives

2019 ◽  
Vol 82 (S 01) ◽  
pp. S62-S71 ◽  
Author(s):  
Volker Arndt ◽  
Bernd Holleczek ◽  
Hiltraud Kajüter ◽  
Sabine Luttmann ◽  
Alice Nennecke ◽  
...  
Keyword(s):  
Data Analysis ◽  
Cancer Registry ◽  
Secondary Data ◽  
Cancer Registries ◽  
Population Based ◽  
Secondary Data Analysis ◽  
Data Availability ◽  
Registry Data ◽  
Cancer Registration ◽  
Cancer Registry Data

AbstractPopulation-based cancer registries have a long-standing role in cancer monitoring. Scientific use of cancer registry data is one important purpose of cancer registration, but use of cancer registry data is not restricted to cancer registries. Cancer registration in Germany is currently heading towards population-based collection of detailed clinical data. This development together with additional options for record linkage and long-term follow-up will offer new opportunities for health services and outcome research. Both regional population-based registries and the German Centre for Cancer Registry Data (ZfKD) at the Robert Koch-Institute as well as international cancer registries and consortia or organizations may provide external researchers access to individual or aggregate level data for secondary data analysis. In this review, we elaborate on the access to cancer registry data for research purposes, availability of specific data items, and options for data linkage with external data sources. We also discuss as well as on limitations in data availability and quality, and describe typical biases in design and analysis.

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