The Duchenne Registry3.3.7 - App Store

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.

Version History We updated About Me Survey and Corticosteroids Survey with minor updates 3.3.7 01/09/2025 iOS 18 compatibility 3.3.6 10/03/2024 New survey added 3.3.5 03/08/2024 Minor bug fix to formatting 3.3.4 04/20/2023 Turn on multilingual capabilities 3.3.3 04/03/2023 Minor updates to surveys 3.2.2 01/27/2023 Minor updates to surveys 3.2.1 10/17/2022 Minor updates to surveys 3.2.0 09/06/2022 Survey updates 3.1.4 08/16/2022 Survey Updates 3.1.3 08/11/2022 Copy updates to existing surveys and other minor fixes. 3.1.2 08/05/2022 Copy updates to exisiting surveys and other minor fixes 3.1.1 05/31/2022 Copy updates to existing surveys and other minor fixes. 3.1.0 01/21/2022 Copy updates to exisiting surveys and other minor fixes. 3.0.4 12/08/2021 Copy updates to exisiting surveys and other minor fixes 3.0.3 09/30/2021 Copy updates to exisiting surveys and other minor fixes 3.0.2 09/22/2021 Activity Issue Resolved 3.0.1 07/22/2021 Copy updates to exisiting surveys and other minor fixes 3.0.0 06/28/2021 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. 2.0.0 06/26/2020 1.0 10/17/2019