Vrdbs Video 1

For almost six decades newborn screening has safeguarded the health of our nation's newborns through a system of screening, diagnosis, treatment and management. Within the first days of life, the 4.3 million infants born in the United States each year are screened for certain harmful or potentially fatal conditions not otherwise apparent at birth. Early diagnosis of these otherwise silent conditions followed by proper treatment can make the difference between lifelong impairment and healthy development. Following the initial screening, residual dried blood spots are often used to evaluate the program and conduct research for the development of new screening tests, to better understand the conditions identified or to discover new congenital disorders. Investigators use these specimens for the development of diagnostics, treatments, new technologies for existing conditions, and discovery of new conditions. Specimens have also been used in population based studies of environmental exposures and infectious diseases. For approved investigators there are multiple barriers that can be challenging to navigate when acquiring residual dried blood spots. As part of the Newborn Screening Saves Lives Act, the Hunter Kelly Newborn Screening Program was established. This program focuses on research related to newborn screening. One of the key components of this program is the Newborn Screening Translational Research Network, or the NBSTRN. The NBSTRN was created through a contract awarded to the American College of Medical Genetics and Genomics by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, NIH. The Newborn Screening Translational Research Network (NBSTRN) facilitates research to improve the health outcomes of newborns with genetic or congenital disorders through an infrastructure that provides the research community access to robust newborn screening resources. Acknowledging the barriers researchers face when acquiring residual dried blood spots, the NBSTRN developed the Virtual Repository of Dried Blood Spots or the VRBDS. The VRDBS is a secure web-based tool that presents a variety of information from participating states. Data on over 2 million de-identified dried blood spots are centrally searchable, while the specimens themselves remain at their state of origin. Through the VRDBS, researchers can search, locate and request specimens directly from the participating state's newborn screening program. All specimens are controlled by the state newborn screening program and no identifying information is sent to the system. The VRDBS provides state public health programs the ability to review and manage these requests, track shipments, and view investigator feedback. For more information about the NBSTRN or the Virtual Repository visit www.nbstrn.org or contact us.