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.