DuchenneConnect PPRN Resources: Responses to Community Needs and Data Reporting

Categories: ,

This describes the resources of The Duchenne Registry and Parent Project Muscular Dystrophy’s online platforms. The authors of these materials are Parent Project Muscular Dystrophy staff, RTI staff, and community advisors (individuals with Duchenne, parents, clinical and research experts). The need for these tools and content were identified through: voting and ranking at PPMD annual meetings; social media and social engagement platforms; advisory committees, work groups and roundtables; survey and interview data.

Duchenne Registry 10-year report: Objective is to report, in a community-friendly approach, aggregated data from the registry. Published on January 15, 2019.

Clinical Trials: This section helps parents and people with Duchenne and Becker muscular dystrophy learn about clinical trials and make informed choices about trial participation. Tools and information in this section include a Trial Finder Tool (available only to registrants). Last updated on December 20. 2018.

Care: The PPMD website has an extensive care series available. As an example, the Pulmonary Care Series and a series of educational whiteboard videos. (Last updated on June 15, 2018).

Community Resource Center: The PPMD Community Resource Center is meant to be a one-stop resource for every child, adult, and family living with Duchenne to find resources, products, and organizations of our community members.

Updated: April 1, 2019


Tags:

engagement, DuchenneConnect, Outreach and Communications