ANN ARBOR – ICPSR has been selected by the Patient-Centered Outcomes Research Institute (PCORI) to build a new repository that will make available the data from a range of the clinical research studies it funds.
ICPSR will develop and maintain this data repository into which researchers funded by PCORI can deposit their full data sets in accordance with PCORI’s Policy for Data Management and Data Sharing. As noted in PCORI’s policy, the intent is to encourage scientifically rigorous secondary use of clinical research data to foster scientific advances that will ultimately improve clinical care and patient outcomes.
“ICPSR worked with PCORI on a pilot project in 2018. That project helped determine how the data repository will be built and ensure secure, FAIR (Findability, Accessibility, Interoperability, and Reuse) access to data collected from PCORI-funded clinical research studies,” said ICPSR’s Amy Pienta, Director of Business and Collection Development, who will lead the project. It is anticipated that the data from several hundred PCORI studies will eventually be archived in the repository.
When the Patient-Centered Outcomes Data Repository (PCODR) website launches early next year, interested researchers will be able to apply online for data access in ICPSR’s Virtual Data Enclave. Applications will be reviewed by an Independent Review Committee to vet requests for scientific merit.
For more information:
Patient-Centered Outcomes Research Institute (PCORI)
Sara Britt, firstname.lastname@example.org