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.
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Panel chair Mathew J. Edick — a father of a child with a rare disease — shares the importance and work of the advisory panel in helping PCORI fund projects that further its mission to help patients and their families make better-informed healthcare decisions. |
Panel member Danielle Boyce — a mother of a child with a rare disease — describes some of the work of the panel and why it is important in helping PCORI fulfill its mission to help patients and their families make better-informed healthcare decisions. |
Posted: November 22, 2013; Updated: September 16, 2022
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