Conducting Rare Disease Research Using PCORnet
Patient-Centered Outcomes Research Institute (PCORI) is releasing the “Conducting Rare Disease Research Using PCORnet®” PCORI Funding Announcement (PFA) on May 5, 2020.
This PFA is open to all network partners of PCORnet®. It seeks to fund studies that utilize PCORnet® resources to perform an observational cohort study that will answer one or more important research question about the care of patients with rare diseases. A secondary goal is to enhance the capabilities for the conduct of multi-site rare disease research by creating partnerships, methods, tools and linkages that will facilitate future comparative effectiveness studies. This initiative will require broad use of PCORnet® resources for research, collaboration between a minimum of two CRNs/HPRNs, and the establishment of partnerships with rare disease patient organizations, with attention to representing the diversity of the population affected by the disease.
For more information, view the pre-announcement and register for a town hall on May 12, 2020 at 12:00 pm.
Patient-Centered Outcomes Research Institute (PCORI)
1828 L Street, NW, Suite 900
Washington, DC 20036
Phone: (202) 827-7700 | Fax: (202) 355-9558