Advisory Panel on Rare Disease
PCORI's Advisory Panels
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.
Highlighting the Work and Importance of the Advisory Panel on Rare Disease
| Aliza Fink, DSc, MS — a member of the PCORI Advisory Panel on Rare Diseases — shares how patient-centered outcomes research and comparative clinical effectiveness research are conducted differently in rare diseases and their importance for patients and families in the rare disease community. |
Advisory Panel Members
Advisory Panel Meetings
- April 24, 2024 Meeting
- October 18, 2023 Meeting
- May 2, 2023 Meeting
- October 25, 2022 Meeting
- May 18, 2022 Meeting
- December 13-14, 2021 Meeting
- May 14, 2021 Meeting
- December 16, 2020 Meeting
- June 22, 2020 Meeting
- September 16, 2019 Meeting
- June 12, 2019 Meeting
- December 14, 2018 Meeting
- June 6, 2018 Meeting
- March 21, 2018 Meeting (Canceled)
- September 27, 2017 Meeting
- April 26, 2017 Meeting
- October 27, 2016 Meeting
- 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: September 16, 2022
