The Duchenne Registry
Duchenne Muscular Dystrophy
Grátis
3.3.5for iPhone, iPod touch
Age Rating
The Duchenne Registry Capturas de tela
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 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.
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.
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Novidades da Última Versão 3.3.5
Last updated on Mar 8, 2024
Versões Antigas
New survey added
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Version History
3.3.5
Mar 8, 2024
New survey added
3.3.4
Apr 20, 2023
Minor bug fix to formatting
3.3.3
Apr 3, 2023
Turn on multilingual capabilities
3.2.2
Jan 27, 2023
Minor updates to surveys
3.2.1
Oct 17, 2022
Minor updates to surveys
3.2.0
Sep 6, 2022
Minor updates to surveys
3.1.4
Aug 16, 2022
Survey updates
3.1.3
Aug 11, 2022
Survey Updates
3.1.2
Aug 5, 2022
Copy updates to existing surveys and other minor fixes.
3.1.1
May 31, 2022
Copy updates to exisiting surveys and other minor fixes
3.1.0
Jan 21, 2022
Copy updates to existing surveys and other minor fixes.
3.0.4
Dec 8, 2021
Copy updates to exisiting surveys and other minor fixes.
3.0.3
Sep 30, 2021
Copy updates to exisiting surveys and other minor fixes
3.0.2
Sep 22, 2021
Copy updates to exisiting surveys and other minor fixes
3.0.1
Jul 22, 2021
Activity Issue Resolved
3.0.0
Jun 28, 2021
Copy updates to exisiting surveys and other minor fixes
2.0.0
Jun 26, 2020
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.
1.0
Oct 17, 2019
The Duchenne Registry FAQ
Clique aqui para saber como baixar The Duchenne Registry em um país ou região restrita.
Confira a lista a seguir para ver os requisitos mínimos de The Duchenne Registry.
iPhone
Requer o iOS 11.0 ou posterior.
iPod touch
Requer o iOS 11.0 ou posterior.
The Duchenne Registry suporta Português, Africâner, Alemão, Amárico, Bielo-russo, Búlgaro, Canarês, Checo, Chinês simplificado, Chinês tradicional, Coreano, Croata, Dinamarquês, Eslovaco, Esloveno, Espanhol, Estoniano, Finlandês, Francês, Georgiano, Grego, Guzerate, Hebraico, Hindi, Holandês, Húngaro, Inglês, Italiano, Japonês, Letão, Lituano, Malaiala, Malaio, Norueguês (bokmål), Polonês, Romeno, Russo, Sesoto, Setswana, Sueco, Sérvio, Turco, Ucraniano, Vietnamita, Xhosa, Zulu, Árabe