Emergency Preparedness Workgroup
In response to the profound impact of Hurricanes Katrina, which significantly disrupted newborn screening (NBS) as well as other healthcare services along the gulf coast, the Southeast Regional NBS & Genetics Collaborative (SERC) created an ongoing Emergency Preparedness Workgroup. This Workgroup meets bimonthly to discuss methods and systems of mitigating disruptions to NBS & Genetic services caused by future emergencies.
Hans C. Andersson (Chair)
P Floyd-Browning, W Perry, HC Andersson. Newborn Screening Results Reporting Survey: A National Snapshot with Implications for Emergency preparedness. J Pediatr, 162(5):955-7, 2013 PMID: 23245195 ( PDF)
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.