The Duchenne Registry 3.3.5

This Registry is dedicated to individuals diagnosed with Duchenne or Becker muscular dystrophy, as well as carriers of Duchenne or Becker. Parents and guardians are welcome to register on behalf of children and teenagers affected by Duchenne/Becker. Additionally, individuals living with or caring for adults with Duchenne/Becker can contribute to the Registry by answering questions on their behalf. Please note that each registrant is limited to one account in the Registry.

The primary objective of this Registry is to collect information that can be easily accessed and utilized while safeguarding your privacy. By offering access to data from the Registry, clinicians, researchers, and pharmaceutical companies can enhance their understanding of Duchenne and Becker, ultimately streamlining the research and clinical trial processes. Moreover, the Registry provides access to information about clinical trials and research studies that may be suitable for you or your family.

As part of our efforts to comprehensively comprehend your health and daily experience with Duchenne/Becker, we will prompt you to complete various surveys. Returning Duchenne Registry participants will find their most recent survey data pre-populated upon downloading the new app. You will also be asked to provide a copy of your genetic test report, with the option to choose the extent of information you disclose. The more comprehensive your data contribution, the more insights we can provide to researchers and the better we can tailor information to meet your individual needs.

Your personal details and contact information will never be shared without your explicit consent. The Duchenne Registry prioritizes safeguarding your privacy and identity and employs all necessary measures to secure your personal data. To facilitate advancements in Duchenne research, we will share de-identified data with eligible researchers worldwide. De-identified indicates that personal identifying details, such as names and addresses, have been removed. Requests for data undergo thorough evaluation by the Registry team to ensure relevance and significance for the community.

Participating in the Registry is entirely voluntary—it is at your discretion whether you choose to take part. You have the freedom to discontinue participation at any time for any reason, without facing penalties or being required to provide an explanation if you opt-out or withdraw from the Registry later on.