The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) was chartered in February 2003 to advise the Secretary regarding the most appropriate application of universal newborn screening tests, technologies, policies, guidelines and standards for effectively reducing morbidity and mortality in newborns and children having, or at risk for, heritable disorders. Click here to learn more.

The information found in RePORTER is drawn from several extant databases–eRA databases, Medline, PubMed Central, the NIH Intramural Database, and iEdison–using newly-formed linkages among these disparate data sources. The comprehensiveness of these databases varies, as does the quality of the linkages formed among them. We expect that the quality of RePORTER data will improve over time as a result of changes in both data collection (e.g., implementation of the NIH Public Access policy) and the increased ability to identify missing information that comes from making these data accessible to more people. Click here to learn more.

The Parents Guide to Newborn Screening preseted by the Health Resources and Services Administration (HRSA) is a brief overview for expecting parents of frequently asked questions.  This resource also provides a list of "7 Things Parents Want to Know About Newborn Screening."

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The National Center for Biotechnology Information at the National Institutes of Health (NCBI-NIH) and Genetic Alliance have collaborated to produce a web-based portal that combines information provided the condition-specific community with numerous educational resource at NIH.  This resource is currently undergoing a considerable remodel, so check back frequently.

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