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The Duchenne Registry 12+
Duchenne Muscular Dystrophy
Hello Thread
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- Free
iPhone Screenshots
Description
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.
What’s New
Version 3.3.5
New survey added
App Privacy
The developer, Hello Thread, indicated that the app’s privacy practices may include handling of data as described below. For more information, see the developer’s privacy policy.
Data Not Linked to You
The following data may be collected but it is not linked to your identity:
- Contact Info
- User Content
- Identifiers
- Diagnostics
Privacy practices may vary, for example, based on the features you use or your age. Learn More
Information
- Seller
- Definitive Media Corp.
- Size
- 170.5 MB
- Category
- Medical
- Compatibility
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- iPhone
- Requires iOS 11.0 or later.
- iPod touch
- Requires iOS 11.0 or later.
- Apple Vision
- Requires visionOS 1.0 or later.
- Languages
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English, Afrikaans, Amharic, Arabic, Belarusian, Bulgarian, Croatian, Czech, Danish, Dutch, Estonian, Finnish, French, Georgian, German, Greek, Gujarati, Hebrew, Hindi, Hungarian, Italian, Japanese, Kannada, Korean, Latvian, Lithuanian, Malay, Malayalam, Norwegian Bokmål, Polish, Portuguese, Romanian, Russian, Serbian, Sesotho, Setswana, Simplified Chinese, Slovak, Slovenian, Spanish, Swedish, Traditional Chinese, Turkish, Ukrainian, Vietnamese, Xhosa, Zulu
- Age Rating
- 12+ Infrequent/Mild Medical/Treatment Information
- Copyright
- © 2024 THREAD
- Price
- Free