Télécharger The Duchenne Registry sur PC

       


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The Duchenne Registry Sur iTunes

Clinicians, researchers and pharmaceutical companies who access the Registry data can better understand Duchenne and Becker.  The Duchenne Registry is deeply committed to protecting your privacy and identity, and will use every available measure to ensure the security of your personal information.  In addition, the Registry also offers you access to information regarding clinical trials and research studies that may be a good fit for you or your child.  This Registry has been created specifically for individuals who have a diagnosis of Duchenne or Becker muscular dystrophy, and for carriers of Duchenne or Becker.  In order to help advance research for Duchenne, we will share your de-identified data with eligible researchers around the world.  If you are a previous Duchenne Registry participant, your most recent survey data will pre-populate when you download the new app.  Individuals who live with or care for adults with Duchenne/Becker may also help with Registry participation by answering questions on their behalf.  The goal of this Registry is to make the information you provide searchable and widely usable, while protecting your identity.  The Registry data can also be used to make the research and clinical trial process faster and more efficient.  The Registry team carefully reviews all requests for data and determines the validity and importance to the community.  However, the more data we have, the more we can share with researchers and the better we can tailor information to your specific needs.  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.  De-identified means that personally identifying information, such as names and addresses, has been removed.  Participation in the Registry is completely voluntary.  You can decide how much information you wish to share.  However, each registrant can only have one account in the Registry.  Your name and contact information will never be given to anyone without your permission.  Parents and guardians may register on behalf of children and teens with Duchenne/Becker.  To better understand your health and your daily experience living with Duchenne/Becker, we will ask you to respond to several surveys.  We will also ask you to share a copy of your genetic test report.  You may also stop participating for any reason and at any time.  It is your choice to participate.