Megan O’Boyle, B.A.

Principal Investigator, Phelan-McDermid Syndrome Foundation

SPARK Scientific & Community Advisory Board Website

Megan O’Boyle is the parent of a 17-year-old daughter with Phelan-McDermid syndrome. This diagnosis includes autism, intellectual disabilities, epilepsy, attention deficit hyperactivity disorder and other medical conditions. She is the principal investigator for the Phelan-McDermid Syndrome Data Network and the Phelan-McDermid Syndrome International Registry.

O’Boyle 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 Institutional Review Board practices and policies.

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