Opportunity Information: Apply for HRSA 21 079
The Long-term Follow-up for Severe Combined Immunodeficiency and Other Newborn Screening Conditions grant opportunity (HRSA 21-079) is a federal funding program run by the U.S. Department of Health and Human Services through the Health Resources and Services Administration (HRSA). It is offered as a discretionary cooperative agreement, which typically means awardees do not just receive funds and operate independently; instead, they can expect active involvement and partnership from HRSA in implementing and refining the work. The program sits within the health funding area (CFDA 93.110) and is focused on improving outcomes for infants and children whose conditions are identified through state newborn screening systems.
At its core, the purpose of the opportunity is to strengthen what happens after a newborn screening result identifies a serious condition, especially severe combined immunodeficiency (SCID) and other newborn screening conditions. Newborn screening is designed to catch certain disorders early, often before symptoms appear, but identifying a condition is only the first step. This program targets the long-term follow-up (LTFU) gap by helping build and expand the capacity of state public health agencies and their partners to make sure children actually receive timely confirmatory testing, appropriate specialty care, counseling for families, and ongoing coordinated services over time. In practical terms, the program is about building a reliable system of care that follows a child beyond the initial screen, tracks outcomes, and helps ensure the screening translates into better health and survival.
A major emphasis of the NOFO is on comprehensive models of long-term follow-up that are built on real collaboration. Applicants are expected to demonstrate partnerships between clinicians (such as immunologists, geneticists, metabolic specialists, and primary care providers), public health agencies (particularly state newborn screening and child health programs), and families. The intent is to create an organized, coordinated approach that can assess needs, connect children to treatment, and manage ongoing follow-up in a way that is sustainable and measurable. This includes the idea of a system that not only refers families out but also monitors whether follow-up happened, whether treatment was started, and how the child is doing over time.
The funding details indicate a relatively competitive national program. HRSA anticipated making about six awards, with an award ceiling of $500,000 per award. The opportunity was posted on March 3, 2021, with an original application deadline of May 3, 2021. Eligibility is listed broadly as "Others," with clarification expected in the NOFO's eligibility section, but the stated goal and framing make it clear the work is designed to expand state-level public health capacity and statewide systems, often through state agencies or closely aligned entities and partnerships.
Overall, this grant opportunity is aimed at turning newborn screening results into long-term health gains by supporting end-to-end follow-up infrastructure: coordinated care pathways, counseling and services for families, collaboration across clinical and public health settings, and organized systems that can track and improve outcomes for children diagnosed through newborn screening, including high-impact conditions like SCID.Apply for HRSA 21 079
- The Department of Health and Human Services, Health Resources and Services Administration in the health sector is offering a public funding opportunity titled "Long-term Follow-up for Severe Combined Immunodeficiency and Other Newborn Screening Conditions" and is now available to receive applicants.
- Interested and eligible applicants and submit their applications by referencing the CFDA number(s): 93.110.
- This funding opportunity was created on Mar 03, 2021.
- Applicants must submit their applications by May 03, 2021. (Agency may still review applications by suitable applicants for the remaining/unused allocated funding in 2026.)
- Each selected applicant is eligible to receive up to $500,000.00 in funding.
- The number of recipients for this funding is limited to 6 candidate(s).
- Eligible applicants include: Others (see text field entitled Additional Information on Eligibility for clarification).
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Frequently Asked Questions (FAQs)
What is the Long-term Follow-up for Severe Combined Immunodeficiency and Other Newborn Screening Conditions opportunity (HRSA 21-079)?
HRSA 21-079 is a federal grant opportunity administered by the U.S. Department of Health and Human Services (HHS) through the Health Resources and Services Administration (HRSA). It supports efforts to improve long-term follow-up for infants and children whose conditions are identified through state newborn screening systems, with a particular emphasis on severe combined immunodeficiency (SCID) and other newborn screening conditions.
Which federal agency runs this program?
The program is run by HRSA, which is part of HHS.
What type of funding mechanism is used for this opportunity?
This opportunity is offered as a discretionary cooperative agreement. In practice, that typically means recipients should expect active HRSA involvement and partnership in implementing, refining, and improving the work, rather than operating fully independently after receiving funds.
What is the main goal of the grant?
The primary goal is to strengthen what happens after a newborn screening result identifies a serious condition. The focus is on building and expanding the capacity of state public health agencies and their partners to ensure children receive timely confirmatory testing, appropriate specialty care, family counseling, and ongoing coordinated services over time.
Why does the program focus on long-term follow-up after newborn screening?
Newborn screening identifies certain conditions early, often before symptoms appear, but identification is only the first step. This program targets the long-term follow-up gap by supporting systems that help ensure confirmatory testing occurs, treatment is initiated when appropriate, and outcomes are tracked so screening leads to measurable improvements in health and survival.
Which conditions are emphasized in this opportunity?
The opportunity emphasizes severe combined immunodeficiency (SCID) and other conditions identified through newborn screening systems.
What kinds of activities or system improvements does the grant aim to support?
Based on the description provided, the grant aims to support end-to-end follow-up infrastructure, including coordinated care pathways, timely confirmatory testing, specialty care connections, counseling and services for families, collaboration across clinical and public health settings, and organized systems to track follow-up actions and child outcomes over time.
What does a "comprehensive model" of long-term follow-up mean in this program?
It refers to an organized, coordinated approach that goes beyond simply making referrals. The model is expected to assess needs, connect children to treatment and services, coordinate ongoing follow-up, and monitor whether follow-up happened, whether treatment was started, and how the child is doing over time.
What partnerships are expected or encouraged for applicants?
Applicants are expected to demonstrate collaboration among clinicians (including immunologists, geneticists, metabolic specialists, and primary care providers), public health agencies (especially state newborn screening and child health programs), and families. The intent is to create a coordinated, sustainable, and measurable follow-up system.
How does this program connect clinical care and public health?
The program is designed to strengthen collaboration between state public health newborn screening programs and clinical providers to ensure that children move from screening to confirmatory testing and ongoing specialty care, and that follow-up is coordinated and tracked as part of a reliable system.
What is meant by "state-level public health capacity" in the context of this opportunity?
It refers to the ability of state public health agencies and their partners to run and sustain statewide systems that coordinate follow-up after newborn screening, ensure services are delivered, and track outcomes over time.
Does the opportunity require tracking whether follow-up and treatment actually occur?
Yes. A key concept described is that the system should monitor whether follow-up happened, whether treatment was started, and how the child is doing over time, rather than stopping at identification or referral.
How many awards were anticipated?
HRSA anticipated making about six awards under this opportunity.
What is the maximum award amount (award ceiling)?
The award ceiling is $500,000 per award.
When was the opportunity posted and what was the application deadline?
The opportunity was posted on March 3, 2021, and the original application deadline was May 3, 2021.
What is the CFDA number and program area?
The opportunity is in the health funding area and is associated with CFDA 93.110.
Who is eligible to apply?
Eligibility is listed broadly as "Others," with clarification expected in the Notice of Funding Opportunity (NOFO) eligibility section. The stated goal and framing indicate the work is designed to expand state-level public health capacity and statewide systems, often through state agencies or closely aligned entities and partnerships.
Is this funding intended to support statewide systems?
Yes. The description emphasizes expanding capacity for state public health agencies and their partners and strengthening statewide long-term follow-up systems connected to state newborn screening programs.
How does this grant help families?
The program highlights counseling for families and coordinated services over time, with the broader intent of ensuring families are connected to appropriate care pathways and ongoing support after a condition is identified through newborn screening.
What is the overall intended impact of the program?
The intended impact is to translate newborn screening results into long-term health gains by ensuring timely confirmation of diagnoses, effective linkage to specialty care and treatment, coordinated long-term services, and systematic tracking of follow-up and outcomes for children diagnosed through newborn screening.
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