MSUD PATIENT REGISTRY

 

A MSUD Registry was identified by our Scientific Advisory Board as the #1 priority for the MSUD community as it will identify the specific challenges and needs of those with MSUD. A robust registry will drive research, serving as a roadmap for investigators as they strive to develop improved treatments and potentially a cure for MSUD. This “Patient’s Voice” is also used by the NIH in evaluating research proposals for funding and by the FDA in approving therapies. It’s importance cannot be overstated.

 

 Follow this link to the CoRDS web page  to learn more and to add your information to the registry.  Your participation will help us advance the search for better treatments and potential cures for MSUD. Help us by registering today!

 

CoRDS Registry

 

 

Jordann Coleman

In this video Jordann Coleman, a member of the MSUD Family Support Group Board of Directors, introduces the group’s patient registry and encourages the MSUD community to register. Learn about our partnership with Sanford CoRDS and why a registry is so important for future research.

 

 

 

Karen Dolins

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.