§300b–15 Hunter Kelly Research Program

Summary

Allows the Health Secretary and the NIH Director, using advice from the Advisory Committee, to run and expand the Hunter Kelly Newborn Screening Research Program. The work includes developing and testing better newborn screening tools, studying experimental treatments and care for conditions found by screening, sharing research to help decide which conditions should be added to the national screening list, running pilot studies to prepare for nationwide use, and other improvements the NIH Director picks. An "additional newborn condition" means any condition not already part of the core conditions recommended and adopted. Funded groups must, when possible, work with state health departments and focus on tests not already used in their state and on conditions on the uniform screening panel. The NIH Director is encouraged to include these activities in the agency’s biennial report and to put the information on the Internet Clearinghouse. The program must avoid repeating work already done, add to rather than replace existing efforts, and not interfere with NIH scientific peer review.