About The Duchenne Registry
The Registry's goal is to collect data to speed research, better understand your health & daily life with Duchenne/Becker and provide access to clinical trials & studies. This Registry has been created specifically for...
The Registry's goal is to collect data to speed research, better understand your health & daily life with Duchenne/Becker and provide access to clinical trials & studies.
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. Parents and guardians may register on behalf of children and teens with Duchenne/Becker. Individuals who live with or care for adults with Duchenne/Becker may also help with Registry participation by answering questions on their behalf. However, each registrant can only have one account in the Registry.
The goal of this Registry is to make the information 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 make the research and clinical trial process faster and more efficient. 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.
To better understand your health and your daily experience living with Duchenne/Becker, we will ask you to respond to several surveys. If you are a previous Duchenne Registry participant, your most recent survey data will pre-populate when you download the new app. We will also ask you to share a copy of your genetic test report. You can decide how much information you wish to share. However, the more data we have, the more we can share with researchers and the better we can tailor information to your specific needs.
Your name and contact information 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 available measure to ensure the security of your personal information. In order to help advance research for Duchenne, we will share your de-identified data with eligible researchers around the world. De-identified means that personally identifying information, such as names and addresses, has been removed. The Registry team 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.
Mar 8, 2024
Version 3.3.5
New survey added
Previous Versions
Here you can find the changelog of The Duchenne Registry since it was posted on our website on 2023-09-07 16:57:29.
The latest version is 3.3.5 and it was updated on 2024-04-23 09:51:42. See below the changes in each version.
The Duchenne Registry version 3.3.5
Updated At: 2024-03-08
Changes: Mar 8, 2024
Version 3.3.5
New survey added
The Duchenne Registry version 3.3.4
Updated At: 2023-04-20
Changes: Apr 20, 2023
Version 3.3.4
Minor bug fix to formatting
Disclaimer
Official App Store Link
We do not host The Duchenne Registry on our servers. We did not scan it for viruses, adware, spyware or other type of malware. This app is hosted by Apple and passed their terms and conditions to be listed there. We recommend caution when installing it.
The App Store link for The Duchenne Registry is provided to you by apps112.com without any warranties, representations or guarantees of any kind, so access it at your own risk.
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