National Newborn Screening and Global Resource Center (NNSGRC)

Description:
The National Newborn Screening and Genetics Resource Center (NNSGRC) is sponsored by the University of Texas Health Science Center at San Antonio (UTHSCSA), Department of Pediatrics. The mission of the NNSGRC is to: 1) provide a forum for interaction between consumers, health care professionals, researchers, organizations, and policy makers in refining and developing public health newborn screening and genetics programs; and 2) serve as a national resource center for information and education in the areas of newborn screening and genetics.

The NNSGRC is established on the principle that accurate genetic information and competent genetic services should be provided to all individuals in a culturally competent, community based, family focused, information oriented, non-directive and confidential manner. To this end, states have a critical role to play in ensuring non-discriminatory effective genetic service and information delivery.

The NNSGRC serves as a focal point for national newborn screening and genetics activities, and provides related resources to benefit health professionals, the public community, consumers and government officials. It also serves to assist states in refining their newborn screening activities through technical assistance reviews and to enhance their capacity to incorporate new developments in genetics, health promotion and disease prevention into the public health system. In addition to annual national information reports on state and territorial newborn screening activities, the NNSGRC coordinates and facilitates national discussions of pertinent topics in the areas of newborn screening and genetics, and assists in developing and implementing related demonstration projects of national interest.