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The Duchenne Registry Gameplay, Trailers and Related Videos

Watch PPMD's DuchenneConnect Registry Benefits video.

Watch How to use the Action Duchenne DMD Registry video.

Watch DuchenneConnect video.

Watch The UK DMD Registry - Angela Stringer Action Duchenne video.

Watch PPMD 2018 Conference - Understanding The Diagnosis of Duchenne video.

Watch The DMD Registry - Neil Bennett, Action Duchenne video.

Watch Neil Bennett: Introduction to Action Duchenne and building a patient registry video.

Watch PPMD 2019 Conference - Addressing the Complexities of Duchenne video.

Watch PF-06252616 (Anti-Myostatin) Webinar [June 2015] video.

Watch Parent Project Muscular Dystrophy "End Duchenne" - 321 FastDraw video.

About the application:

This Registry has been made specifically for individuals who have a diagnosis of Duchenne or Becker muscular dystrophy, and for carriers of Duchenne or Becker. Parents and guardians may register on behalf of kids and teens with Duchenne/Becker. Individuals who live with or care for adults with Duchenne/Becker may also assist with Registry participation by answering questions on their behalf. However, each registrant can only have one acc in the Registry. The goal of this Registry is to create the info you provide searchable and widely usable, while protecting your identity. Clinicians, researchers and pharmaceutical companies who access the Registry data can better understand Duchenne and Becker. The Registry data can also be used to create the research and clinical trial process faster and more efficient. In addition, the Registry also offers you access to info regarding clinical trials and research studies that may be a awesome fit for you or your child. To better understand your health and your everyday experience living with Duchenne/Becker, we will ask you to answer to a few surveys. If you are a previous Duchenne Registry participant, your most latest survey data will pre-populate when you download the fresh apk. We will also ask you to share a copy of your genetic try report. You can decide how much info you want to share. However, the more data we have, the more we can share with researchers and the better we can tailor info to your specific needs. Your name and contact info will never be given to anyone without your permission. The Duchenne Registry is deeply committed to protecting your privacy and identity, and will use every accessible measure to ensure the safety of your private info. In order to assist advance research for Duchenne, we will share your de-identified data with eligible researchers around the globe. De-identified means that personally identifying info, such as names and addresses, has been removed. The Registry squad carefully reviews all requests for data and determines the validity and importance to the community. Participation in the Registry is completely voluntary. It is your choice to participate. You may also stop participating for any reason and at any time. If you decide not to participate or if you decide later to withdraw from the Registry, we will not penalize you or ask you for an explanation.