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Individuals with Sickle Cell Disease or Inherited Metabolic Disorders who have Successfully Transitioned from Pediatric to Adult Care Needed for Online Survey Participation | News
Individuals with Sickle Cell Disease or Inherited Metabolic Disorders who have Successfully Transitioned from Pediatric to Adult Care Needed for Online Survey Participation
Research Opportunity

Researchers with SERC Medical Home & Transitioning Workgroup and SERC Consumer Alliance are are recruiting individuals ages 25-35 (and/or their parent or caregiver) who has successfully completed the healthcare transitioning process from pediatric to adult care. This is the first study of its kind using a Delphi survey technique from the consumer perspective. Participants must be willing to complete 3 rounds of online surveys for a one hour time commitment.   For more information, contact the SERC study coordinator Mary Lauren Salvatore at mlsalva@emory.edu or (404) 778-8527.

SERC is a HRSA-Supported Partnership -- GRANT #H46MC24090

Southeast NBS & Genetics CollaborativeAdded
2016-11-07 by Mary Salvatore
Last Updated
2016-11-07 by Adrya Stembridge

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