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.
Disclaimer: This tool was developed and provided by a third party. Opinions and information in this content are those of the third party and do not necessarily represent the views of PCORI. Accordingly, PCORI cannot make any guarantees with respect to the accuracy or reliability of the information and data in this content.
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