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Megan O’Boyle


Megan O’Boyle

Phelan-McDermid Syndrome Foundation, USA

Biography

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 is passionate about the value of the patient’s voice in research, drug development, clinical trial design, development of related legislation and quality of life decisions. She advocates for data sharing, collaborating with other advocacy groups, sharing resources and streamlining IRB practices and policies.

Abstract

Abstract : Engaging families in research to drive progress: the phelan-mcdermid syndrome international registry (PMSIR) and the phelan-mcdermid foundation data network (PMS_DN)

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