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 on Rare Disease was approved by the PCORI Board of Governors on November 18, 2013.
The panel chair and the chair of the PCORI Methodology Committee chair may appoint subcommittees to address specialized issues, specific clinical trials, and specific technical advice.
Advisory Panel Members
Advisory Panel Meetings
Posted November 22, 2013; Updated May 2, 2014