|PCORnet Network Affiliation|
|PCORnet Network Position||
Matt is part-time, remote for Genetic Alliance and manages the Community Engaged Network for All (CENA), a Patient-Powered Research Network (PPRN) working to engage communities and building participant-centric research cohorts using web-based tools. Matt also serves in leadership with the Joubert Syndrome Foundation (JSRDF), one of the 11 CENA-member DAOs. He has an eight-year-old niece, Haley, who has Joubert syndrome (JS). By day, Matt is a research specialist and laboratory manager at the University of North Carolina.
|Primary Institution Title||
Project Manager, CENA
Participant engagement, registries, translation of community input to research outcomes