Planning Your Research

NBSTRN creates a centralized point of access to information valuable to conducting newborn screening research.

Disorders identified through newborn screening are typically rare and conducting research in this field requires accessing multiple information portals. In addition newborn screening related research requires knowledge about state regulations, IRB requirements, and consideration of multiple ethical and legal issues.
As a solution, the NBSTRN developed the resources listed above that facilitate research related to newborn screening.
  • ELSI Advantage

    An ethical, legal and social issues resource for NBS researchers. Information on IRB's, Consent Form templates, and NBS FAQ's are available here.

  • State Profiles

    Information about the state rules, regulations, and requirements related to NBS and research

  • Gaps in Research

    Gaps in research identified via the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children that may be ripe for investigation

  • Disease Registries

    Links to patient registries and newborn screening related information

  • Request a Letter of Support

    Request a letter of support for your NBS research project

  • Study Planning Consultation

    Interactive informed consent modules specific
    to research in newborn screening