From: Adadevoh, Yetsa K [mailto:[log in to unmask]]
Sent: Thursday, July 12, 2012 9:41 AM
Subject: Launch Announcement NBS Connect Patient Registry



On behalf of the Southeast Newborn Screening and Genetics Collaborative (SERC) and Emory University, we are pleased to announce that the NBS Connect patient registry has officially launched after concluding the beta testing phase with members of the Consumer Alliance group. We are thankful for the valuable feedback provided to help us improve the content, layout and resources provided through the registry.


NBS Connect 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, followed by other disorders in the NBS panel recommended by the American College of Medical Genetics (ACMG).


Please encourage the patients affected with PKU in your region, to visit the website at , 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 your patients 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. Please see the attached brochure for more information. If you have any questions, please email the project coordinator Yetsa Adadevoh at [log in to unmask]. ­­­­­­­­­­­


As our projects continue to grow and develop, we look forward to continued collaboration with you. It is our hope that through partnership, we can assist one another in achieving the goal of improving the lives of the individuals that we seek to serve.



For more information or to request brochures for your clinic, please contact:


Yetsa Adadevoh, MPH                                               Rani Singh, PhD, RD                                                                                                                                                            

Senior Project Coordinator                                         Associate Professor and Principal Investigator

Office: 404 778-3353                                                  Email: [log in to unmask]

Email: [log in to unmask]                       



Yetsa K. Adadevoh, MPH
Senior Research Project Coordinator
Emory Medical Genetics
2165 North Decatur Road
Atlanta, GA 30033
Tel (404) 778-3353



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