The grant steering committee is responsible for the overall conduct of the grant and for making all required reports to HRSA. The grant steering committee meets monthly to ensure active direction and oversight of grant activities. It reports to the Southeast Genetics Collaborative Advisory Committee.
Chair: Rani Singh, Emory University
Co-Chair: Hans Andersson, Tulane University
Alex Kemper, Duke University
Jim Eckman, Emory University
Ify Osunkwo, North Carolina
Olaf Bodamer, University of Miami
Phaidra Floyd-Browning, Tulane University
Cecelia Bellcross, Emory University
Joseph Telfair, Georgia Southern University
Melissa Perez, Consumer Alliance
Tim Wood, Greenwood Genetics Center
Lokie Harmond, Emory University
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 firstname.lastname@example.org.