MSUD PATIENT 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.
Information on long-term health and quality of life in individuals with MSUD is lacking.
Your participation in this registry will provide a substantial gain to the scientific community. It may help to eliminate gaps in medical services provided and improve access to care while establishing best standards of practice for clinical management of all impacted by MSUD.
The MSUD registry can provide natural history data to support clinical trials as well as provide a better understanding of long-term outcomes and unmet medical needs that ultimately will lead to better patient care and treatments and improved quality of life. Your participation is essential!
Follow these links to the CoRDS web page to learn more and to add your information to the registry. The videos below will help walk you through it. Your participation will help us advance the search for better treatments and potential cures for MSUD. Help improve the lives of those with MSUD by registering today!
In this interview Dr. Karen Dolins, Research Lead and Secretary of the MSUD Family Support Group Board of Directors, discusses MSUD, its impact on her family’s life and how the registry will enable the MSUD research effort to move forward.
THE MSUD REGISTRY
WHAT WE HAVE LEARNED FROM YOU
Have you participated in the MSUD Registry with Sanford CoRDS yet? If you are one of the 145 people who did, thank you! Here’s what we have learned so far from 117 responses:
- 87% of respondents have Classic MSUD
- 55% have been hospitalized 5 times or more
- 13% are seen by their metabolic team monthly or quarterly; 73% are seen semi-annually or annually
- 53% receive the results of routine blood tests within 48 hours
- 24% report having received a diagnosis of an anxiety disorder
- 41% report strict compliance with diet
- 23% report out of pocket expenses related to MSUD of more than $2500 annually
- 14% report receiving individual assistance at school
- 32% of adults report living with their parents
More Results From The MSUD Registry
Please help us learn more by registering if you haven’t already done so. We need to hear from as many people as possible, including those who are transplanted and those living in other countries.
Do you prefer to respond in Spanish? We have you covered! Contact CoRDS by calling 877-658-9192 or emailing them at firstname.lastname@example.org to request Spanish language questionnaires.