Understanding DuchenneConnect

 
DuchenneConnect has been created by Parent Project Muscular Dystrophy (PPMD) to serve as a central hub linking the resources and needs of those with Duchenne/Becker muscular dystrophy and the medical and research communities.

A diagnosis of Duchenne or Becker muscular dystrophy can be overwhelming. Families may encounter questions about unfamiliar topics including care, treatment and, increasingly, genetic testing.  Information is available, of course, from multiple sources, but it can be difficult to sort through and make sense of this information and understand how to use it.  

That’s where DuchenneConnect comes in.

DuchenneConnect gathers together, in one place, all the information, guidance and resources that families need to help them make informed decisions. At the heart of DuchenneConnect is the Profile and Patient Registry.

Registering with DuchenneConnect and completing a Profile connects you to the latest news and information about Duchenne/Becker muscular dystrophy and current clinical trials, and allows you to learn more about the community. Registering also gives you access to information about care and treatment; genetic testing and counseling services and enables us to tell you about upcoming research studies for which you may qualify.  DuchenneConnect can also enroll you in the international TREAT-NMD registry to make certain you have access to current developments in the global Duchenne/Becker muscular dystrophy community. 

Educational materials and new functions are continuously being added to the website, so check back often for the most up-to-date information. A DuchenneConnect Coordinator is available to assist you at each step of the way.

The benefits you receive by joining are not just one way: the information you provide in your Profile will be analyzed by DuchenneConnect and made available to registered members of the muscular dystrophy medical and research community, with all personally identifying information removed. This information helps medical and research professionals learn more about the differences reported among those diagnosed with Duchenne/Becker muscular dystrophy.   After completing a profile, you will be able to access the search function.  This allows you to search the group of profiles.  For example, you could search the profiles based on age, diagnosis, or mutation type.  

It is our hope that the registry will lead to advances in care and treatment that will ultimately benefit families affected by muscular dystrophy. This is a central component of the DuchenneConnect vision — that every member of the community plays a vital role in the fight to end Duchenne and Becker.

Thank you for registering with DuchenneConnect. Your participation is a vital part of muscular dystrophy research.