About The Duchenne Registry
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...
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.
Previous Versions
Here you can find the changelog of The Duchenne Registry since it was posted on our website on 2019-11-11 12:24:06.
The latest version is 1.0.148 and it was updated on 2024-04-19 18:00:46. See below the changes in each version.
The Duchenne Registry version 1.0.148
Updated At: 2024-02-27
Changes: New survey added
The Duchenne Registry version 1.0.141
Updated At: 2023-04-14
Changes: Minor bug fix to formatting
The Duchenne Registry version 1.0.140
Updated At: 2023-03-24
Changes: Turn on multilingual capabilities
The Duchenne Registry version 1.0.97
Updated At: 2022-04-28
Changes: Copy updates to existing surveys and other minor fixes.
The Duchenne Registry version 1.0.87
Updated At: 2021-09-21
Changes: Copy updates to exisiting surveys and other minor fixes.
The Duchenne Registry version 1.0.71
Updated At: 2020-06-24
Changes: Introducing the Parent and/or Caregiver field, new name fields to include Parent and Caregivers during Participant registration. This release includes the new Parent/Caregiver registration fields, copy updates to exisiting surveys, and other minor fixes.
The Duchenne Registry version 1.0.60
Updated At: 2019-09-13
Changes: Initial Release
Disclaimer
Official Google Play 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 Google and passed their terms and conditions to be listed there. We recommend caution when installing it.
The Google Play 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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