This notice announces the opportunity to apply for funding under the Cooperative Newborn Screening System Priorities Program (NBS Co-Propel).
The purpose of this program is to strengthen the newborn screening (NBS) system to provide screening, counseling, and health care services to newborns and children with, or at risk for, heritable disorders and help them achieve the best possible outcomes. Funding will support up to 10 recipients to 1) address state/territory-specific challenges and pursue priorities to enhance, improve, and expand their NBS System; 2) increase timely collection and reporting of NBS specimens to improve early diagnosis and treatment for individuals with heritable conditions identified through NBS; and 3) support long-term follow-up (LTFU) for individuals with Severe Combined Immunodeficiency (SCID) and other NBS conditions that link public health agencies, clinicians, and meaningfully engages and partners with families.
Goal
NBS Co-Propel builds on previously funded HRSA grants to strengthen collaborations between state/territory public health agencies and with NBS partners such as universities, non-profits, or other institutions with expertise in NBS to achieve a common goal: to improve access to services and outcomes for children identified with a heritable condition through NBS so they are healthy, growing, and thriving.
NBS Co-Propel has two focus areas:
Focus Area 1 includes activities related to improving collection of specimens, testing of specimens, and reporting out of results, including improving the timeliness of these activities; and implementing screening for newly added RUSP conditions.
Focus Area 2 includes activities related to improving short-term follow-up through long-term follow-up and helping families understand and navigate the process from confirmation of a diagnosis to treatment, and through follow-up across the lifespan. These activities include expanding access to diagnosis and treatment resources for providers and families of infants with SCID and other NBS disorders with a focus on reaching underserved populations, and empowering families to actively engage at all levels of the NBS system.
Program Objectives
• By June 2028, increase by 5 percent the number of NBS specimens collected within 48 hours of birth.
• By June 2028, increase by 10 percent the presumptive positive results for time-critical conditions that are communicated immediately to the newborn’s healthcare provider but no later than five days of birth.
• By June 2028, increase by 5 percent of all NBS results (normal and out-of-range) that are reported within 7 days of birth, overall and for all races and ethnicities.
• By June 2028, state/territory NBS program collects and reports on at least one NBS Long Term Follow Up Quality Indicator for at least one heritable condition identified through dried blood spot screening.
• By June 2028, state/territory NBS program has a data collection plan developed in collaboration with NBS Excel to measure the percentage of 3-year-old children with at least one heritable condition identified through NBS who are thriving.
All data and plans must be submitted to the recipient of NBS Excel (HRSA-23-077).
