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Introducing the NBS Connect patient registry! | News
Introducing the NBS Connect patient registry!
NBS Connect http://nbsconnect.org has been designed as a resource for those affected by certain disorders included in the newborn screening (NBS) panel. Extensive development of the registry will occur via a phased approach. The registry was launched with NBS-PKU Connect for Phenylketonuria, then NBS-MSUD Connect for Maple Syrup Urine Disease. The next phase is now available with. NBS-TYR Connect for Tyrosinemia. Expansion of the registry will continue to include other disorders in the recommended uniform screening panel (RUSP), endorsed by the American College of Medical Genetics (ACMG)

We encourage patients affected with PKU, MSUD and Tyrosinemia to visit the website at www.nbsconnect.org , 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. We hope you will take advantage of the resources provided which will empower you to make more informed healthcare decisions.

This registry will be an asset both for forming connections between consumers and for building a qualitative database for future research.

If you have any questions, please email the project manager Yetsa Osara at coordinator@nbsconnect.org.

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1969

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December 31st, 1969

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Southeast NBS & Genetics CollaborativeAdded
2012-08-13 by Yetsa Osara MPH
Last Updated
2016-08-17 by Adrya Stembridge

SERC Highlights
February 2017

SERC/GMDI announces Nutrition Management Guidelines for MSUD

SERC/GMDI announces Nutrition Management Guidelines for MSUD

Management Guidelines cover the evaluation, assessment, and management of patients known to have a particular condition. SERC and GDMI partnered to develop nutrition management guidelines based on our rigorous DNDF methodology. The creation of the nutrition management guidelines has been a multi-year project to develop evidence and consensus based guidelines of inborn errors of metabolism (IEM).   This is the first publicly available MSUD guideline to all metabolic dietitians, physicians and other clinicians. The portal utilizes a tool for development of guidelines of genetic metabolic disorders for which there is little published scientific evidence. The practice recommendations are an effort to increase standardization of care and enable outcomes studies within and across centers. When warranted by developments in MSUD research and clinical practice, these guidelines will be updated periodically and will be maintained through a Dynamic process.

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