About the MSUD Family Support Group Registry
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.
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