Development of technologic solutions to address complex local requirements of an international prostate cancer clinical quality registry

Fanny Sampurno, Ashwini Kannan, Mark Lucas, John Liman, Sarah E. Connor, Emily Pearman, Jeremy L. Millar, Caroline M. Moore, Paul Villanti, Ellie James, Hartwig Huland, Mark S. Litwin, Sue M. Evans

Research output: Contribution to journalArticleResearchpeer-review

3 Citations (Scopus)


PURPOSE To detail the process for importing a defined data set into a centralized global registry via a secure file transfer platform and to understand the barriers to the establishment of a centralized global registry. RESULTS A bespoke solution was developed to allow transmission of data from international local data centers to a centralized repository. Data elements included in the import template were drawn from existing International Consortium for Health Outcome Measurement variables and refined to ensure accurate benchmarking as well as feasibility in data completeness. The data set was organized in accordance with the prostate cancer care trajectory. Key considerations in developing the data transfer platform included import file format, process of input validation, and technical provisions. Given the diversity in the legislation and ethical requirements with respect to consent, data handling, and cross-border data transfer across geographic locations, we encouraged each local data center to consult with its legal advisors and research ethics committee early on in the process. DISCUSSION A global collaboration, although highly valuable, posed many challenges because of inconsistent methods of data collection. User acceptance of a system is paramount to the success of establishing a metaregistry. Local information technology support and regular regression testing ensures quality and maintenance of the database. CONCLUSION We developed a Web-based system to facilitate the collection and secure storage of common data, which is scalable and secure. It is anticipated that through systematic recording of data, global standards of clinical practice and outcomes of care will see vast improvements.

Original languageEnglish
Pages (from-to)1-11
Number of pages11
JournalJCO Clinical Cancer Informatics
Publication statusPublished - 22 Mar 2019

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