# The Duchenne Registry — Duchenne Muscular Dystrophy > Duchenne and Becker muscular dystrophy registry for patients, carriers, and caregivers. (iPhone/iPad app by Hello Thread.) - Source: https://appshunter.io/ios/app/the-duchenne-registry/id1473205578 (this page in markdown: same URL + `.md`) - Developer: [Hello Thread](https://appshunter.io/developer/996237890) - Category: Medical, Health & Fitness - Price: Free - Rating: 5.00/5 from 5 App Store ratings - Age rating: 12+ - Requires: iOS 15.0 · 136 MB - Languages: Afrikaans, Amharic, Arabic, Belarusian, Bulgarian, Croatian, Czech, Danish, Dutch, English and 37 more - Released: 2019-10-17 - Data updated: 2026-07-07 - Monetization: free - User reviews in markdown: https://appshunter.io/ios/app/the-duchenne-registry/id1473205578/reviews.md ## What is 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 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. ## Key features - Patient data collection for Duchenne/Becker - Information sharing with researchers - Access to clinical trial information - Secure and private data handling - Survey participation for health insights - De-identified data for research ## Frequently asked questions about The Duchenne Registry ### What is The Duchenne Registry? The Duchenne Registry is a platform designed for individuals diagnosed with Duchenne or Becker muscular dystrophy, and their carriers. It collects and securely shares de-identified data with researchers and clinicians to advance understanding and treatment of these conditions. ### Who can register for The Duchenne Registry? Individuals diagnosed with Duchenne or Becker muscular dystrophy, carriers of these conditions, and parents or guardians registering on behalf of children and teens can participate. Caregivers of adults with these conditions can also assist with registration. ### How is my data protected in The Duchenne Registry? The Duchenne Registry is committed to protecting user privacy and identity. Personally identifying information is removed before data is shared with researchers, and all data is handled with robust security measures. ### Is participation in The Duchenne Registry mandatory? No, participation in The Duchenne Registry is completely voluntary. Users can choose to participate, stop participating at any time, or withdraw their data without penalty or explanation. ### What kind of information will I be asked to share? You will be asked to respond to surveys about your health and daily experiences living with Duchenne/Becker. You may also be asked to share a copy of your genetic test report, with the option to decide how much information you wish to share. ### Can I access information about clinical trials through The Duchenne Registry? Yes, the Registry offers access to information regarding clinical trials and research studies that may be a good fit for you or your child. This helps connect participants with potential research opportunities. ### What devices is The Duchenne Registry available on? The Duchenne Registry is currently supported on iPhone and iPod devices. It is designed for users who have these Apple mobile devices. ### How often is The Duchenne Registry updated? The latest version of The Duchenne Registry is 3.3.7, which was last updated on January 9, 2025. This indicates regular updates to improve functionality and security. ## Version history (last 5 releases) ### 3.3.7 — 2025-01-09 We updated About Me Survey and Corticosteroids Survey with minor updates ### 3.3.6 — 2024-10-03 iOS 18 compatibility ### 3.3.5 — 2024-03-08 New survey added ### 3.3.4 — 2023-04-20 Minor bug fix to formatting ### 3.3.3 — 2023-04-03 Turn on multilingual capabilities ## Apps similar to The Duchenne Registry | App | Rating | Price | Category | | --- | --- | --- | --- | | [Exon Map Explorer](https://appshunter.io/ios/app/exon-map-explorer/id1604723218) | — | Free | Medical | | [PANTHERx Rare](https://appshunter.io/ios/app/pantherx-rare/id6474763116) | 4.1 (14) | Free | Medical | | [Phoenix Children's Hospital](https://appshunter.io/ios/app/phoenix-childrens-hospital/id1583977355) | 4.2 (12) | Free | Medical | | [MyChildrensMercy](https://appshunter.io/ios/app/mychildrensmercy/id6443944512) | 2.0 (11) | Free | Medical | | [MyPermobil](https://appshunter.io/ios/app/mypermobil/id1351654177) | 2.5 (65) | Free | Medical | | [MyAnovo](https://appshunter.io/ios/app/myanovo/id6742406230) | — | Free | Medical | ## More apps by Hello Thread - [IED Log](https://appshunter.io/ios/app/ied-log/id1500234267) - [HELIOS-A](https://appshunter.io/ios/app/helios-a/id1528146060) - [FINEARTS-HF #20103](https://appshunter.io/ios/app/finearts-hf-20103/id1536715345) - [Abbott SMBG Study](https://appshunter.io/ios/app/abbott-smbg-study/id1536721001) - [T1D Trial](https://appshunter.io/ios/app/t1d-trial/id1540940479) All apps by Hello Thread: https://appshunter.io/developer/996237890 --- *Data collected daily from the US App Store and indexed by [AppsHunter](https://appshunter.io/). User reviews are verbatim App Store reviews. Ratings, prices and chart positions refresh continuously; this snapshot is from 2026-07-07.*