About The Registry

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 10-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, without ever leaving your home.


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 2017, The Duchenne Registry Australia (formerly DuchenneConnect Australia) was launched in partnership with Save Our Sons Duchenne Foundation. This addition gives the Australian Duchenne and Becker community their first patient led registry and a local portal into The Duchenne Registry.

 

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
  • Kevin Counterman, The Duchenne Registry Assistant Curator

Save Our Sons Duchenne Foundation

  • Kristina Elvidge, PhD, Co-Director of The Duchenne Registry Australia
  • Klair Bayley, RN, Co-Director of The Duchenne Registry Australia

RTI International

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

Invitae

  • Jud Rhode, CTO

The operations team behind The Duchenne Registry continues to refine and perfect the site 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 This email address is being protected from spambots. You need JavaScript enabled to view it. 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.

 

About Save Our Sons Duchenne Foundation

Save Our Sons' mission is to help find a cure for Duchenne by funding research into new treatments, support children and their families living with Duchenne, and raise awareness of their plight.

Clinical trials and preclinical studies in Australia, UK, USA & Canada currently receive research funding from Save Our Sons. Funding programs to improve the quality of life for those in all stages of Duchenne is also a priority. They help families afford equipment such as coughing and breathing machines, swim and mobility scooters and stand-up wheelchairs to give back what Duchenne has taken away.

 Furthermore, Save Our Sons distributes new diagnosis packs to help families understand Duchenne upon diagnosis, as well as teacher resource packs to help teachers support those with Duchenne in the school environment.

A comprehensive and effective national patient registry for Duchenne is also a key mission of Save Our Sons, in addition to funding Duchenne-trained nurses in every state of Australia to help children with Duchenne and their families.

For more information about Save Our Sons Duchenne Foundation, visit www.saveoursons.org.au.