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Victor R DeJesus, PhD

Victor R DeJesus, PhD   
Roles
NBS Tandem MSMS Expert

Centers & Contact Information

SERC Highlights
July 2014

Introducing the NBS Connect patient registry!

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 using Phenylketonuria (PKU) as the model disorder. We have recently launched the Maple Syrup Urine Disease (MSUD) patient profile, which will be followed by other disorders in the NBS panel recommended by the American College of Medical Genetics ACMG).

We encourage patients affected with PKU and MSUD 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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