THE STRENGTH OF

THE REGISTRY IS YOU

Your data is critical in the fight to end Duchenne

WHY JOIN THE DUCHENNE REGISTRY (PREVIOUSLY DUCHENNECONNECT)

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Advance Research & Speed Development of New Treatments

If you have Duchenne or Becker muscular dystrophy or if you are a female carrier of Duchenne or Becker, join The Duchenne Registry and your data will help fuel the fight to end Duchenne. We share your anonymous Registry data with researchers to speed the development of new therapies.

You Have the Power to Make a Difference

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.

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Join Patients Around the World

No one should have to navigate a Duchenne diagnosis alone. Be part of the global community to end Duchenne. The data you enter is not only shared with researchers in the United States, but is also shared with the TREAT-NMD International Neuromuscular Registry, which pools data from thousands of patients worldwide and enables more powerful data analysis and discovery.

Find out About Research Studies & Clinical Trials

Once you register and complete your Medical Surveys, we will let you know when you might be a good fit for research studies and clinical trials. Your data also helps drug developers know the size of the Duchenne population available for trials and helps identify new trial sites, increasing our community’s access to trials and potential therapies.

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Decode Duchenne

Decode Duchenne

Free genetic testing through Decode Duchenne

DuchenneConnect Video

DuchenneConnect Video

Watch our fun video to learn more about DuchenneConnect

Education

Education

Learn about Duchenne and Becker muscular dystrophy

Clinical Trials

Clinical Trials

Read our family-friendly FAQs on clinical trials

Live Chat

Live Chat

Log in to chat online with one of our Certified Genetic Counselors.

Registry Benefits

Registry Benefits

Learn about the many benefits of joining the registry

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Click here to register now!

icon connect

Advance Research & Speed Development of New Treatments

If you have Duchenne or Becker muscular dystrophy or if you are a female carrier of Duchenne or Becker, join The Duchenne Registry and your data will help fuel the fight to end Duchenne. We share your anonymous Registry data with researchers to speed the development of new therapies.

You Have the Power to Make a Difference

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.

icon connect

icon connect

Join Patients Around the World

No one should have to navigate a Duchenne diagnosis alone. Be part of the global community to end Duchenne. The data you enter is not only shared with researchers in the United States, but is also shared with the TREAT-NMD International Neuromuscular Registry, which pools data from thousands of patients worldwide and enables more powerful data analysis and discovery.

Find out About Research Studies & Clinical Trials

Once you register and complete your Medical Surveys, we will let you know when you might be a good fit for research studies and clinical trials. Your data also helps drug developers know the size of the Duchenne population available for trials and helps identify new trial sites, increasing our community’s access to trials and potential therapies.

icon connect

Fund Research

Donate to PPMD

In partnership with

Parent Project Muscular Dystrohpy
Save Our Sons - Duchenne Australia
Treat-NMD