duchenneconnect.orgDuchenneConnect - NORD National Organization for Rare

About About The Registry Meet the App App Q&A Participation Q&A Partners Contact Us Reports Ten Year Report Publications Join About About The Registry Meet the App App Q&A Participation Q&A Partners Contact Us Reports Ten Year Report Publications Join The strength of the registry is you Your data is critical in the fight to end Duchenne. Join/Login ALREADY PARTICIPATING? The Duchenne Registry has moved to a new Mobile App platform! If you are an existing participant of The Duchenne Registry, your account has automatically been transferred over to our new Mobile App. If you have any questions, or have not received your email invitation containing your Activation Code, please contact us. Contact Us > JOINING FOR THE FIRST TIME? If you are joining The Duchenne Registry for the first time, complete our pre-registration form to get started. You will then receive an email invitation with a link to download The Duchenne Registry Mobile App. The email will also include your Activation Code, which you will use to register within the app. Get Started > Why Join The Duchenne Registry (Formerly DuchenneConnect) 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 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. By sharing your data, you become a citizen scientist by contributing to real scientific research. Join Patients Around the World No one should have to navigate a Duchenne diagnosis alone. Be part of the global research network 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. Join Our Impact 5000+ Registrations Since Launch 115+ Countries Represented 12YRS of Longitudinal Data 100+ Trials & Studies Recruited Learn More Decode Duchenne Decode Duchenne provides free genetic testing, interpretation, and counseling to people with Duchenne or Becker muscular dystrophy who have been unable to access genetic testing due to financial barriers. The program is administered by Parent Project Muscular Dystrophy through The Duchenne Registry, and is supported by Sarepta Therapeutics and PTC Therapeutics. Learn More Meet our new & improved platform! We’ve made some changes to The Duchenne Registry and we’d love to share them with you. Learn more about how to download the Registry App and what to expect when logging in or joining for the first time. Learn More The Duchenne Registry: Meet the App The Duchenne Registry is an international registry for Duchenne and Becker muscular dystrophy. Watch our new video to learn more about the benefits of joining the Registry and how you can join via our new smartphone app! Watch Video MEET OUR NEW & IMPROVED PLATFORM! We’ve made some changes to The Duchenne Registry and we’d love to share them with you! Learn how to download the Registry App and what to expect when you login or join for the first time. Meet the App > © 2020 Parent Project Muscular Dystrophy | Contact Us | Terms & Conditions | Privacy Policy | 888-520-8675 | coordinator@duchenneregistry.org | 401 Hackensack Avenue, 9th Floor, Hackensack, NJ 07601 Designed and Developed by Firefly Partners...