PCORI PPRN - Phelan McDermid Syndrome Data Network (PMS_DN) Phase II

Co-PI ($1.2M) Total $1.6M (PI: Megan O'Boyle from PMSF)

Phelan McDermid Syndrome Data Network (PMS_DN): A PCORI Patient Powered Research Network

The PMS_DN mission is to advance knowledge, care, and treatment of Phelan-McDermid Syndrome (PMS), and related conditions by integrating diverse, complex datasets from multiple sources into a richly populated, high quality, and accessible centralized database to facilitate patient-centered research. The network promotes a culture of transparency and authentic engagement and leadership of families in network vision, governance, and generation of research priorities. The organizations participating in the PMS_DN include: The Phelan McDermid Syndrome Foundation (PMSF), the Department of Biomedical Informatics at Harvard Medical School (HMS), and Boston Children's Hospital