The Newborn Screening Connect patient registry (NBS Connect) is a web-based self-report patient registry curated by professionals. This resource is for those affected by certain disorders included in the newborn screening panel. The registry has been developed by national experts in the field of NBS disorders at the Department of Human Genetics at Emory University, and serves as a support network for parents, guardians and individuals with inborn errors of metabolism.

Extensive development of the registry is occurring via a phased approach which began with the launch of NBS-PKU Connect for Phenylketonuria (PKU). We have now concluded beta testing and we are launching the next phase with NBS-MSUD Connect for Maple Syrup Urine Disease (MSUD). We will continue expanding the registry to include other disorders in the NBS panel recommended by the American College of Medical Genetics (ACMG).

NBS Connect brings together patients, families, parent organizations, professionals, and industry in one forum.  Professionals and industry are able to share clinical trial information with patients, professionals have access to de-identified patient survey data, patients and families are able to connect with one another and access useful tools such as recipes and educational resources.

We ask all adult patients and parents or guardians of individuals with PKU or MSUD, to visit the website at, to register and complete their participant profiles. Participants will have access to disorder specific education materials, information on the latest research and clinical trials, recipes, interactive health tracking systems, “Ask an Expert” tools and more. Patients who take advantage of the resources provided, become empowered to make more informed healthcare decisions.

This registry is an asset both for forming connections between consumers and for building a qualitative database for future research. Interest in this project continues to grow and is currently gaining an international presence.

If you have any questions about the patient registry or require brochures for distribution, please contact Yetsa Osara, MPH at This email address is being protected from spambots. You need JavaScript enabled to view it. or 404-778-0553. Register at today!


Melvin Carruth

This letter is a tribute to my brother Melvin Carruth! We believe he is one of the oldest living African Americans with Maple Syrup Urine Disease.

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NBS-MSUD Connect: Your One-Stop Shop For MSUD Resources

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.

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Cambrooke Therapeutics

Cambrooke Therapeutics continues to expand its line of delicious and nutritious low protein foods to help improve the lives of individuals with Inborn Errors of Metabolism such as MSUD.

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The Nutrition Management Guideline for MSUD was first published in 2014. Since that time, there have been reports of new research and experiences that have prompted updates of the guideline.

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Emory Metabolic Camp 2018 Announcement

Join us June 18-23, 2018 for the 24th Annual Metabolic Camp at Emory University in Atlanta, GA!

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From The Chairman’s Desk

As I sit here reflecting on how much the care and treatment of MSUD has changed over the years, my mind goes back to 1978 when our son Keith was born.

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MSUD Advocacy Report

Medical Nutrition Equity Act

The Medical Nutrition Equity Act (MNEA) would require all private insurance plans (state regulated or self-insured/self-funded) and federal health programs, including Children’s Health Insurance Program, Tricare, Medicaid, Medicare, and Federal Employee Health Benefit Plans, to provide coverage for formula and low-protein foods for all children and adults with MSUD.

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The MSUD Family Support Group Is Excited To Announce Their Participation In The Million Dollar Bike Ride

The MSUD Family Support Group is excited to announce their participation in The Million Dollar Bike Ride

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19th Biennial MSUD Symposium

I can’t believe that almost two years have passed and it is time for another MSUD Symposium! I am especially excited about this conference because I’ve built in extra time for social interaction.

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A Child's Life

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