Long-term Follow-up for Severe Combined Immunodeficiency and Other Newborn Screening Conditions

This notice announces the opportunity to apply for funding under the Long-term Follow-up for Severe Combined Immunodeficiency and Other Newborn Screening Conditions program. The goal of this program is to ensure that newborns and children identified through newborn screening (NBS) achieve the best possible outcomes by expanding the ability of state public health agencies to provide screening, counseling and services to these newborns and children and to collaborate with clinicians, public health agencies and families to create a system of care that can assess and coordinate follow-up and treatment of newborn screening conditions.1 This NOFO supports this goal by making available funding to support comprehensive models of long-term follow-up (LTFU) that demonstrate collaborations between clinicians, public health agencies, and families.

Per statute, eligible applicants include: (1) a state or a political subdivision of a state; (2) a consortium of two or more states or political subdivisions of states; (3) a territory; (4) a health facility or program operated by or pursuant to a contract with or grant from the Indian Health Service; or (5) any other entity with appropriate expertise in NBS, as determined by the Secretary. Per 42 U.S.C. § 201, the term “state” includes, in addition to the several states, only the District of Columbia, Guam, the Commonwealth of Puerto Rico, the Northern Mariana Islands, the Virgin Islands, American Samoa, and the Trust Territory of the Pacific Islands. Domestic faith-based and community-based organizations, tribes, and tribal organizations are also eligible to apply.

Mabatemije Otubu, RN, MPH

(301)594-4462