DuchenneConnect Patient-Powered Research Network
The DuchenneConnect Registry and its members, a program of Parent Project Muscular Dystrophy (PPMD), are proud members of PCORnet (Patient Centered Outcomes Research Network). PCORnet was developed by PCORI (Patient Centered Outcomes Research Institute). The purpose of PCORnet is to create a network where research that is most important to patients, their families, and their care providers is done quickly and efficiently.
PCORnet is a national network that has two main types of participating networks. The first group includes large multi-member health-focused organizations, called Clinical Data Research Networks (CDRNs). The second group are patient-centered organizations, called Patient-Powered Research Networks (PPRNs) like DuchenneConnect. If you are a member of the DuchenneConnect Registry you are also a member of PCORnet. If you are not a member, please consider joining.
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