SERC | Southeast NBS & Genetics Regional Collaborative

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Regional Collaboratives

SERC is part of a larger network of regional collaboratives led by the National Coordinating Center for the Genetic and Newborn Screening Service Collaboratives (NCC). Connect with our partner collaboratives below.

Connecticut, Massachusetts, Maine, New Hampshire, Rhode Island and Vermont

Connecticut, Massachusetts, Maine, New Hampshire, Rhode Island and Vermont
http://www.negenetics.org/

Delaware, District of Columbia, Maryland, New Jersey, New York, Pennsylvania, Virginia and West Virginia

Delaware, District of Columbia, Maryland, New Jersey, New York, Pennsylvania, Virginia and West Virginia
http://www.wadsworth.org/newborn/nymac/wg3member.html

Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, Puerto Rico, South Carolina, Tennessee and the Virgin Islands

Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, Puerto Rico, South Carolina, Tennessee and the Virgin Islands
http://southeastgenetics.org/

Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio and Wisconsin

Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio and Wisconsin
http://region4genetics.org/

Arkansas, Iowa, Kansas, Missouri, Nebraska, North Dakota, Oklahoma and South Dakota

Arkansas, Iowa, Kansas, Missouri, Nebraska, North Dakota, Oklahoma and South Dakota
http://www.heartlandcollaborative.org/

Arizona, Colorado, Montana, Nevada, New Mexico, Texas, Utah and Wyoming

Arizona, Colorado, Montana, Nevada, New Mexico, Texas, Utah and Wyoming
http://www.msgrcc.org/

Alaska, California, Guam, Hawaii, Idaho, Oregon and Washington

Alaska, California, Guam, Hawaii, Idaho, Oregon and Washington
http://www.westernstatesgenetics.org/

NCC focuses on bringing quality genetic and newborn screening (NBS) services to local communities, and building bridges between public health, primary care/Medical Home, geneticists and other specialists, and families and consumers.

NCC focuses on bringing quality genetic and newborn screening (NBS) services to local communities, and building bridges between public health, primary care/Medical Home, geneticists and other specialists, and families and consumers.
http://www.nccrcg.org

SERC Highlights
February 2017

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. 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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© 2006-2016   —   SOUTHEAST NBS & GENETICS COLLABORATIVE   —   A HRSA SUPPORTED PARTNERSHIP   —   GRANT #H46MC24090