The MSUD Family Support Group Registry is a patient-driven registry that allows people who are impacted by MSUD to share their health data and experience living with the condition. This research initiative has been identified by the MSUD Scientific Advisory Board as the #1 priority for the MSUD community. The MSUD Registry collects information on diagnosis, management, treatment practices, barriers to care, and quality of life, creating a roadmap for researchers in their quest to better understand the needs of our community and to develop new treatments and potential cures for this disease.
Your participation will:
Help fill in gaps in our knowledge related to the long-term health and quality of life of individuals with MSUD.
Identify areas for future research aimed at the successful treatment of MSUD.
Help doctors understand the unmet needs of those with MSUD.
Facilitate the development of new treatments for MSUD by providing a natural history to support clinical trials.
Guide the development of standards of treatment for those with MSUD.
This information is gathered through online surveys which can be completed at your own pace. If you prefer, written surveys can be mailed to you. Your information remains private and is not linked to your name or other identifiers.
You will be asked to update your information annually.
Disclaimer Regarding Participation in Rare Disease Registries
Canadian PKU and Allied Disorders (CanPKU+) is proud to collaborate with various rare disease registries — including, but not limited to, the MSUD Family Support Group Registry— to support advancements in research and improve understanding of rare disorders.
However, we want to ensure that our community is fully informed. Please be aware that the data you choose to provide to these registries is not stored within Canadian data centres. Information submitted may be stored in facilities located outside of Canada, such as the United States, and may therefore be subject to foreign legislation, including the USA PATRIOT Act and other applicable laws.
We strongly advise our Canadian participants never to share sensitive personal information such as banking details, Social Insurance Numbers (SIN), or any similar sensitive identifiers when engaging with these registries.
CanPKU+ fully supports the responsible sharing of information to advance rare disease research and recognizes the significant value these registries bring to the community and to scientific progress. At the same time, we are committed to keeping our community informed and empowered to make the best choices about their personal data.
If you have any questions or concerns, please do not hesitate to reach out to us. We are here to help guide you with the most up-to-date information.
