Annotation: The National Newborn Screening and Genetics Resource Center (NNSGRC) is a cooperative agreement between the Maternal and Child Health Bureau (MCHB), Genetic Services Branch and 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 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. The center also provides technical assistance to assist states in refining their newborn screening activities and enhancing their capacity to incorporate new developments in genetics, health promotion, and disease prevention. The NNSGRC coordinates and facilitates national discussions of pertinent topics in the areas of newborn screening and genetics, assists in developing and implementing related demonstration projects of national interest., and produces annual national information reports on state and territorial newborn screening activities. The Web site provides downloadable newborn screening and disease-specific brochures in various languages, a guide to regional genetics and newborn screening collaboratives as well as state-specific contact information; and the National Newborn Screening Information System, which services as a information collection and reporting system for capturing state and territorial newborn screening information. In September 2009 it was funded to create the National Newborn Screening Clearinghouse.
Keywords: Genetics, National MCH resource center, Neonatal screening, Online databases, Regional genetics networks, Resource centers