Information Technology Workgroup
The primary focus of this workgroup will be to make recommendations as to the preferred technologies for a widely distributed network of participants dealing with rare disease patients. Systems should allow for local data collection in the course of clinical care with integration into local institutional medical records (manual or electronic). These data should be available locally in an identifiable format and centrally in a de-identified format. It should be accessible in some form to state officials.
NBSTRN
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 NBSTRN is funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health (contract #HHSN275200800001C). ©2011 American College of Medical Genetics. All Rights Reserved.
