The Mission of the Newborn Screening Translational Research Network (NBSTRN) is to improve the health outcomes of newborns with genetic or congenital disorders by means of an infrastructure that allows investigators access to robust resources for newborn screening research. The graphic below describes the four key components of our infrastructure.
Goals of the NBSTRN
- To enable biomedical investigators, with appropriate IRB permission and privacy protections, to access dried bloodspots and other biological specimens in a site-independent manner for research.
- Support the needs of investigators to:
- To evaluate the predictive value of biomarkers through early phase clinical/epidemiological studies.
- To facilitate the development and assessment of new methods and technologies to improve the capacity for early identification through newborn screening.
- To identify candidate diseases for inclusion in expanded newborn screening.
- To determine the effectiveness of treatments and long-term outcomes by means of studies involving screened and treated patients.
- To encourage collaboration among researchers and rapid dissemination of information to promote progress and avoid fragmentation of effort.
- To develop policies and procedures that support privacy and confidentiality of patient-related information as well as appropriate rules by which to conduct the research.