About The Duchenne Registry

The Duchenne Registry (formerly DuchenneConnect) began in 2007, when a group of thought leaders in the Duchenne muscular dystrophy community began discussing the need for a new kind of resource that would connect and serve the needs of the entire community. What they envisioned was a central hub that would bring together those living with Duchenne or Becker, along with their families and caregivers, to connect them with medical research, clinical care, clinical trials, and each other. At the same time, it would also be a resource for researchers and industries with an interest in Duchenne, allowing access to aggregate, de-identified data provided by patients and their families — information that could prove vital to advances in care and treatment. Today, the result of this endeavor is The Duchenne Registry, the largest, most comprehensive registry for Duchenne and Becker muscular dystrophy.

When you join and update your account in The Duchenne Registry, you are strengthening the power of a 12-year-old network of patient-powered data that will be used to improve care for people living with Duchenne and increase our understanding of the disorder. You become a citizen scientist by contributing to real scientific research, by simply sharing your data.

Founding Organizers and Partners

Created by Parent Project Muscular Dystrophy (PPMD), the founding organizers of The Duchenne Registry came from leaders in government agencies (Centers for Disease Control and Prevention; NIH – Office of Rare Diseases, Collaboration, Education & Test Translation Program; National Center for Biotechnology Information); IT development (PatientCrossroads/Invitae); and academic institutions (Emory University, Department of Human Genetics).

Since 2011, The Duchenne Registry has been funded entirely by PPMD, and PPMD is the sole guardian of the Registry and its material. PPMD is deeply committed to the Registry to ensure that it is serving the needs of the entire Duchenne and Becker community.

In 2019, The Duchenne Registry transitioned to a mobile app-based platform with THREAD Research. All Registry data collected through the app, as well as legacy data collected prior to 2019, will flow into the new Duchenne Outcomes Research Interchange which is managed by Prometheus Research.

 

The Duchenne Registry Operations Team

Parent Project Muscular Dystrophy

  • Pat Furlong, Founding President & CEO
  • Kimberly Galberaith, Chief Operating Officer
  • Ann Martin, MS, CGC, Director of The Duchenne Registry
  • Jennifer Ely, MS, CGC, Decode Duchenne Program Manager
  • Kathi Kinnett, MSN, CNP, Sr VP of Clinical Care
  • Abby Bronson, Sr VP of Research Strategy and PCORnet Co-PI
  • Elizabeth Habeeb-Louks, PCORnet Program Manager

RTI International

  • Holly Peay, PhD, CGC, PCORnet Co-PI

THREAD Research

Prometheus Research 

In 2019, a new Duchenne Registry Steering Committee was formed to replace the previous Advisory Board. The Steering Committee consists of 12 members, including leading clinicians and researchers as well as parents and individuals with Duchenne. The Steering Committee meets monthly and provides oversight, support and guidance for the Registry.

The operations team behind The Duchenne Registry continues to refine and perfect the website and mobile app so that it evolves to best serve the needs of the Duchenne community. We are open to your suggestions and feedback. Please contact us at coordinator@duchenneregistry.org or 888-520-8675.

About Parent Project Muscular Dystrophy

Parent Project Muscular Dystrophy (PPMD) fights every single battle necessary to end Duchenne. We are the only nonprofit organization in the United States that takes a comprehensive approach to address the full impact and progression of Duchenne.

We invest deeply in treatments for this generation of Duchenne patients and in research that will benefit future generations. Our advocacy efforts have secured hundreds of millions of dollars in funding and won two FDA approvals. We demand optimal care standards and ensure every family has access to expert healthcare providers, cutting edge treatments, and a community of support. We attack Duchenne from all angles, using every single weapon in our arsenal – the greatest of which is you.

Everything we do—and everything we have done since our founding in 1994—helps those with Duchenne live longer, stronger lives. Your ongoing support gives us the resources we need to have the greatest impact. Every single dollar we raise strengthens this impact.