Megan O'Boyle (2019)

Megan O'BoyleMs. O’Boyle is the Principal Investigator for the PCORI funded Phelan-McDermid Syndrome (PMS) Data Network (PMS_DN, PCORnet) and the Phelan-McDermid Syndrome International Registry (PMSIR). She is also a parent of a child with Phelan-McDermid Syndrome. This diagnosis includes autism, intellectual disabilities, epilepsy, ADHD, and other medical conditions. The web-based PMSIR was launched in May 2011, and currently has more than 70% of the PMS Foundation families enrolled. Ms. O’Boyle also directed a biosample collection for PMS families that is now part of the NIMH Stem Cell Center at the Rutgers University Cell and DNA Repository. 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, developing international patient registries, improving patient engagement, sharing resources and streamlining IRB practices and policies.