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NBS-MSUD Connect was launched as part of the Newborn Screening Connect patient registry (NBS Connect) in 2013 through a partnership between the Department of Human Genetics at Emory University, the Maple Syrup Urine Disease (MSUD) Family Support Group and other key stakeholders. As a complement to the fantastic resources and services already provided by the MSUD Family Support Group, NBSMSUD Connect is designed to connect patients and families while providing information and tools for living with MSUD. NBS-MSUD Connect also gives participants the opportunity to contribute to MSUD research by creating and maintaining a registry profile that collects data on a variety of key issues within the MSUD community, such as diagnosis, treatment, symptoms, outcomes, barriers to care, and quality of life.

To access the resources outlined below, please create an NBS-MSUD Connect registry account or login to your existing account today!
  • Ask an Expert: Do you have questions about nutrition, clinical trials, genetic testing, family planning and more? The experts at NBS-MSUD Connect can help! Simply login at NBSconnect. org, fill out the online form on our “Ask an Expert” page, and connect with professionals who specialize in nutrition, genetics, research and other fields.
  • Kitchen Connection: Spice up your diet with a new recipe! Kitchen Connection is a growing collection of low protein recipes developed or adapted by registered dietitians. Each recipe includes a nutritional analysis complete with calories, protein and leucine content to make diet management as easy as possible. Visit our “Kitchen Connection” page and find your favorite recipe today.
  • Clinical Trials: Advance MSUD research through participation in a clinical trial or research study. NBS-MSUD Connect aims to connect families who are interested in participating in clinical trials with researchers who are recruiting patients. Check out the “Clinical Trials” page for general information about understanding clinical trials, and register to view current research studies, including recruitment status and results outcomes.
  • Explore NBS-MSUD Connect Data: After completing the surveys within your registry profile, see how your responses compare to other participants. Visit our “View Data” page to access aggregated data submitted by registrants with MSUD. YOUR RESPONSES REMAIN ANONYMOUS. INDIVIDUALS WHO PARTICIPATE IN THE REGISTRY ARE NOT IDENTIFIED IN ANY PUBLISHED DATA.
  • Additional Internet Resources: For your convenience, NBS-MSUD Connect has gathered a variety of online resources that may be useful to those living with MSUD. This includes the Genetic Metabolic Dieticians International’s guide on “Leucine and Protein Content of Foods Appropriate for Individuals on a Leucine-Restricted Diet;” the USDA’s guide for “Accommodating Children with Special Dietary Needs in School Nutrition Programs;” search engines for locating a genetic counselor, geneticist, or metabolic dietitian; and much more.


Please contact the registry team if you have any questions about NBS-MSUD Connect. We are also available to provide assistance in creating or updating an account.
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.;
Phone: 404-778-0553.

Register at www.nbsconnect.org today!

HRSA Supported Partnership — Principal Investigator: Rani Singh, PhD, RD, LD; Grant #UH7MC30772



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