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Collecting Your Community’s Health Data for Researchers

If you are a leader of a Rare Disease Patient Advocate Organization or Nonprofit, here is your chance to learn how the RARE-X program with Global Genes can help you build a data collection program.

Speaker: Megan O’Boyle, Patient Engagement Lead, RARE-X
Megan O’Boyle is the Principal Investigator for the Phelan-McDermid Syndrome Data Network (PMS_DN, PCORnet) and the Phelan-McDermid Syndrome International Registry (PMSIR). She serves as a patient advisor on the NIH Council of Councils, the Simon’s Foundation – SPARK project, is a former advisor to the NCATS Advisory Council and has several PCORI awards, including FasterCures and Academy Health. She advocates for data sharing, collaborating with other advocacy groups, sharing resources, and streamlining IRB practices and policies. As the Patient Engagement Lead for RARE-X, she brings her decade of experience in advocacy to help patient groups develop and govern their new Data Collection Program with the RARE-X platform.

Jan 25, 2023 04:00 PM in Eastern Time (US and Canada)