PCORI's funded patient-centered comparative clinical effectiveness research (CER) generates large amounts of data that provide significant opportunities to ask additional scientific questions that could strengthen the evidence base for the treatment decisions of patients and clinicians, thereby amplifying the public benefit possible from the funding investment.

The Patient-Centered Outcomes Data Repository


Patient-Centered Outcomes Data Repository - A collaboration between PCORI and ICPSR

The Patient-Centered Outcomes Data Repository (the Repository) facilitates responsible data sharing for appropriate secondary use through the preservation of research data and data documentation from PCORI-funded studies. The Repository is currently the only collection of its kind focused exclusively on patient-centered CER data. The Repository contains data from a growing number of PCORI-funded studies covering a range of diseases and therapeutic areas. This community resource has the potential to:

  • Optimize the potential for research participants’ contribution to generalizable knowledge about human health by facilitating additional data use and the findings possible beyond the original, prespecified research purposes
  • Accelerate the discovery of new and better care approaches through additional analyses, reproduction of published findings and the development of avenues for new research

Access the Repository

Responsible Data Sharing

The Repository follows PCORI’s Policy for Data Management and Sharing, which calls for PCORI-funded studies to share responsibly datasets and documentation to enable reanalysis and reuse. Responsible data sharing involves respecting the interests of CER study participants and acknowledging and maximizing the contributions possible through their research participation. The following data-sharing principles support responsible use of the data within the PCORI Repository:

PCORI Applicant and Awardee Resources

Certain PCORI research awardees are required to systematically create and preserve research data and data documentation to facilitate data sharing. PCORI has developed resources to support awardees in developing their Full Data Package and adding it to the Repository. The Full Data Package supports the usability of the data and increases the likelihood that any requestors can analyze the data without additional assistance from the study’s investigators.

For questions about PCORI’s Data Management and Data Sharing Policy and supporting guidelines, email [email protected].

Transparency and Availability of PCORI-Funded Research Results

The Repository is part of a series of initiatives PCORI has undertaken to support the transparency and broader availability of research results, including:

  • Ensuring all results from PCORI-funded studies undergo peer review and are made publicly available on PCORI’s website in a Final Research Report
  • Developing brief summaries of all PCORI-funded studies and their findings and posting of public and professional abstracts on PCORI’s website
  • Covering journal costs so articles with the final results of PCORI-funded studies are freely available to the public

Explore PCORI's portfolio of funded research to learn more.

Posted: January 24, 2024

What's Happening at PCORI?

The Patient-Centered Outcomes Research Institute sends weekly emails about opportunities to apply for funding, newly funded research studies and engagement projects, results of our funded research, webinars, and other new information posted on our site.

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