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.<http://www.surveymonkey.com/MySurvey_EditPage.aspx?sm=WdN%2bWIW8T4y7faR9lgwZAHlNQqpGfx80FiQSv0TbEAA7BIgtw9K4g10pyJo%2bsbdS&TB_iframe=true&height=450&width=650> 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 nbsconnect.org<http://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 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]<mailto:[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]<mailto:[log in to unmask]> Email: [log in to unmask]<mailto:[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 www.genetics.emory.edu<http://www.genetics.emory.edu/> ________________________________ This e-mail message (including any attachments) is for the sole use of the intended recipient(s) and may contain confidential and privileged information. If the reader of this message is not the intended recipient, you are hereby notified that any dissemination, distribution or copying of this message (including any attachments) is strictly prohibited. If you have received this message in error, please contact the sender by reply e-mail message and destroy all copies of the original message (including attachments).