The Advisory Panel on Rare Disease will advise and provide recommendations to PCORI’s Board of Governors, Methodology Committee, and staff on the conduct of patient-centered comparative clinical effectiveness research in rare diseases and on coordination and engagement with the rare disease research community, including other funders of research on rare diseases and existing infrastructure dedicated to research on rare diseases.
Ad-Hoc Expert Advisory Panels
In the case of a research study for each rare disease, the Rare Disease Advisory Panel shall assist PCORI in identifying experts to serve on a condition-specific ad hoc advisory panel to assist in evaluating, designing and conducting PCORI-funded research and determining the relative value and feasibility of conducting the research study.
The charter for the Advisory Panel was approved by the PCORI Board of Governors on November 18, 2013.
Advisory Panel Members
Advisory Panel Meetings
- May 18, 2016 Meeting (Canceled)
- January 27, 2016 Meeting
- October 30, 2015 Meeting
- May 27, 2015 Meeting
- January 13, 2015 Meeting
- October 7, 2014 Meeting
- August 13, 2014 Meeting
- April 30, 2014 Meeting
Posted: November 22, 2013; Updated: March 31, 2016