Scope of Work of the NBSTRN

The Scope of Work for the NBSTRN was established by the contract with NICHD.

Overarching Goal:

Establish and manage the Newborn Screening Translational Research Network Coordinating Center (NBSTRNCC) and the provision of technical, regulatory, statistical, and administrative support to carry out the tasks specified below, and other tasks as directed by the Project Officer.

Specifications:

1. Establish an organized network of:
   1. State newborn screening programs
   2. Clinical centers
2. Develop, implement and refine a national research informatics system for investigators and policy makers that dovetails with established national clinical networks.
3. Establish and administer an efficient and reliable repository of residual dried blood spots that is either virtual or physical. It should be comprised of those stored by State newborn screening programs and other resources.
4. Provide expertise and support related to regulatory requirements associated with informed consent, IRBs, and state and local research policies associated with newborn screening.
5. Facilitate research on the development of new methods and technologies by maintaining close contact with the scientific and biomedical research community.
6. Facilitate research on screened and treated patients to define effectiveness of treatments and long-term outcomes.
7. Provide statistical leadership and clinical trial design expertise for the individualized needs of researchers through the NBSTRN Coordinating Center for procedures.
8. Facilitate the timely dissemination of research findings.
9. Recruit a steering committee comprised of knowledgeable healthcare professionals, public health professionals, ethicists and scientists to make recommendations to Program Officer regarding research proposals to have access to the NBSTRNCC.