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 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!

 

CoRDS Registry

 

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.

 

Enrolling In The CoRDS Registry

In this video, learn how to enroll in the CoRDS Registry.

 

Completing the Questionnaire

In this video, walk through the CoRDS questionnaire and learn how to correctly enter your data.

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 cords@sanfordhealth.org to request Spanish language questionnaires.