Megan O'Boyle, BA, is the parent of a 16-year-old daughter with Phelan-McDermid Syndrome (PMS). 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 (PMS_DN) under PCORnet, and the Phelan-McDermid Syndrome International Registry (PMSIR). The Web-based PMSIR was launched in May 2011, and currently more than 60 percent of the PMS Foundation families are registered.
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.