PMS-DN
This registry newsletter by the Phelan-McDermid Syndrome Data Network (PMS-DN) Patient-Powered Research Network (PPRN) highlights exciting updates related to the network's registry, including a link to their Registry 101 webinar. The newsletter can give other teams an example of communication with study participants.
PMS_DN formerly was a Network Partner of PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.
Resource Focus:
Educational Materials; Engagement Approaches; Study Outreach
Phases of Research:
Dissemination
Patients and Public Stakeholders:
Researcher; Clinician; Patient