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Validation of Cancer Cases Using Primary Care, Cancer Registry, and Hospitalization Data in the UK

Margulis Andrea V; Fortuny, Joan; Kaye, James A; Calingaert, Brian; Reynolds, Maria; Plana, Estel; McQuay, Lisa J; Atsma, Willem Jan; Franks, Billy; de Vogel, Stefan; Perez-Gutthann, Susana; Arana, Alejandro
doi: 10.1097/EDE.0000000000000786
Validation Study: PDF Only


In the United Kingdom, hospital or cancer registry data can be linked to electronic medical records for a subset of general practices and years.


We used Clinical Practice Research Datalink data (2004-2012) from patients treated for overactive bladder. We electronically identified provisional cases of 10 common cancers in General Practitioner Online Database data and validated them by medical profile review. In practices with linkage to Hospital Episodes Statistics and National Cancer Data Repository (2004-2010), we validated provisional cancer cases against these data sources. This linkage also let us identify additional cancer diagnoses in individuals without cancer diagnosis records in the General Practitioner Online Database.


Among 50,840 patients, 1,486 provisional cancer cases were identified in the General Practitioner Online Database for 2004-2012. Medical profile review confirmed 93% of 661 cases in non-linked practices (range, 100% of non-Hodgkin lymphomas and uterine cancer to 77% of skin melanomas) and 96% of 825 cases in linked practices (100% of kidney and uterine cancers to 92% of melanomas). In the subset of linked practices, for 2004-2010, 720 cases were confirmed, of which 68% were identifiable in the General Practitioner Online Database (range, 90% of breast to 36% of kidney cancers).


Most cases of cancer identified electronically in the General Practitioner Online Database were confirmed. A substantial proportion of cases, especially of cancer types not typically managed by general practitioners, would be missed without Hospital Episodes Statistics and National Cancer Data Repository data (and are likely missed in non-linked practices).

Registration (before study conduct):

European Union electronic Register of Post-Authorisation Studies (EU PAS Registry) number EUPAS5529,

This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal.

Financial Support: This study was funded by Astellas Pharma Global Development, Inc.

Conflicts of Interest: The contract provides the research team independent publication rights. Andrea Margulis, Joan Fortuny, James Kaye, Brian Calingaert, Maria Reynolds, Estel Plana, Lisa McQuay, Susana Perez-Gutthann, and Alejandro Arana are employees of RTI International, an independent, nonprofit research organization that does work for government agencies and pharmaceutical companies. Willem Jan Atsma, Billy Franks, and Stefan de Vogel are employees of Astellas Pharma Global Development, the sponsors of this study.

Acknowledgments: We thank Jennifer Bartsch for her help with programming, Christine Bui and Alicia Gilsenan for their help managing the project, Adele Monroe for her editorial help, Jason Mathes for his help preparing figures (all from RTI International); Kwame Appenteng and Milbhor D’Silva for their input at all stages of the study (both from Astellas); and CPRD research staff for their support to the program.

Reproducibility: The results of the study were generated by RTI Health Solutions (RTI-HS) using data obtained from CPRD. RTI-HS developed proprietary code to perform the analyses on the data. Researchers desiring access to the data would be required to obtain permission from the study sponsor, obtain data use agreement with CPRD and develop their own code.

Corresponding Author: Andrea V Margulis, RTI Health Solutions, Av. Diagonal, 605, 9-1, 08028 Barcelona, Spain, Telephone: +, E-mail:

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