Opportunity Information: Apply for HRSA 13 213
Apply for HRSA 13 213
- The Health Resources and Services Administration in the health sector is offering a public funding opportunity titled "Integrating Newborn Screening Long term Follow up into Primary Care Practices" and is now available to receive applicants.
- Interested and eligible applicants and submit their applications by referencing the CFDA number(s): 93.110 Maternal and Child Health Federal Consolidated Programs.
- This funding opportunity was created on Dec 20, 2012 and posted on Dec 20, 2012.
- Applicants must submit their applications by Feb 19, 2013. (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 $110,000.00 in funding.
- The number of recipients for this funding is limited to 3 candidate(s).
- Eligible applicants include: Others (see text field entitled Additional Information on Eligibility for clarification).
- Eligible applicants include a state or a political subdivision of a state a consortium of two or more states or political subdivisions of states a territory a health facility or program operated by or pursuant to a contract with or grant from the India
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Opportunity Summary:
The HRSA grant opportunity "Integrating Newborn Screening Long term Follow up into Primary Care Practices" (Funding Opportunity Number HRSA 13-213) supports a demonstration program aimed at bringing newborn screening (NBS) long-term follow-up (LTFU) activities into everyday primary care workflows. The core purpose is to test whether primary care practices can realistically take on and sustain key long-term follow-up responsibilities described in a 2011 SACHDNC report titled "What Questions Should Newborn Screening Long term Follow up Be Able to Answer." In practical terms, the program is trying to move long-term follow-up beyond isolated specialty settings and into the medical home, so that children identified through newborn screening receive coordinated, continuous care and so that public health systems can obtain consistent outcome information over time.
The opportunity is grounded in the work of the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC), which advises the US Department of Health and Human Services on reducing illness and death from heritable conditions, with a strong focus on newborn screening. While newborn screening has long been successful at early identification, the announcement highlights that systematic evaluation of outcomes beyond simple long-term survival is still relatively limited. This grant is designed to help fill that gap by building the ability to collect and share longer-term clinical and care-coordination data, using primary care as a central hub and aligning with public health newborn screening follow-up programs.
A key feature of the program is that applicants must structure their demonstration around the major long-term follow-up domains emphasized in the SACHDNC framework: care coordination, evidence-based treatment, continuous quality improvement, and new knowledge discovery. The announcement translates those broad domains into specific, primary-care-centered questions that participating clinics should be able to address. These include whether children and adolescents are receiving coordinated care through a medical home, how they are doing clinically over time, whether children identified through newborn screening and enrolled in care have better outcomes than children identified later through clinical presentation, whether primary care providers can assess and improve whether they are delivering the best possible care for these patients, and whether patients have opportunities to enroll in clinical research studies related to their conditions.
Applicants are strongly encouraged to build on existing national infrastructure rather than starting from scratch. In particular, the program encourages use of NICHD's Newborn Screening Translational Research Network (NBSTRN), including its long-term follow-up database and common data elements, or alignment with other established newborn screening long-term follow-up projects. Because the demonstration involves patient information and potentially research participation, the announcement emphasizes that appropriate informed consent and Institutional Review Board (IRB) processes must be followed wherever applicable.
To be competitive, applicants must show they can create functional links between primary care practices and state newborn screening follow-up systems, with the goal of seamless, reliable follow-up for infants and children diagnosed through NBS. The grantee is expected to establish collaborations with at least two primary care practices that have at least one patient identified through newborn screening and/or that are connected to a long-term follow-up network. Examples mentioned include Community Health Centers, Federally Qualified Health Centers, or other primary care practices supported by HRSA's Bureau of Primary Health Care, working in coordination with state newborn screening systems. A further structural requirement is that participating primary care practices and long-term follow-up networks must already have established communication channels and must be working within an established Regional Collaborative under HRSA's Genetic Services grantee network. This reflects the program's emphasis on building within existing regional systems rather than creating standalone projects.
A major deliverable is a feasibility assessment plan showing that participating clinics can produce concrete long-term follow-up metrics that map directly to the SACHDNC questions. The announcement lists the types of measures clinics should be able to answer, such as: the number of children identified by newborn screening and enrolled in care who have an individualized health or care-coordination plan that is updated regularly (reported both in total and by specific condition); the number of children identified through NBS who are doing better than those identified clinically; the number of NBS disorders for which best practices exist to guide ongoing disease management for children enrolled in care; and the number of children identified through NBS who are enrolled in disorder-related clinical research. The emphasis is not only on collecting information, but on demonstrating that primary care can reliably generate accurate, ongoing data that is useful to public health departments and newborn screening long-term follow-up programs.
From an administrative standpoint, this is a discretionary grant in the health category, administered by the Health Resources and Services Administration. The opportunity anticipated up to 3 awards, with an award ceiling of $110,000 and no cost sharing or matching requirement. The CFDA number listed is 93.110 (Maternal and Child Health Federal Consolidated Programs). The posting date was December 20, 2012, with an original and current closing date of February 19, 2013, and an archive date of April 20, 2013. Eligibility is described broadly and includes state or political subdivisions of states, consortia of states or political subdivisions, territories, and certain health facilities or programs operated by or under contract/grant arrangements involving the Indian Health system (as reflected in the truncated eligibility text provided).
Overall, the grant is best understood as a targeted implementation and systems-integration project: it is less about discovering new screening tests and more about proving that primary care practices, connected through regional genetics and public health networks, can coordinate care, track outcomes, support quality improvement, and contribute standardized data for long-term monitoring and research opportunities for children identified through newborn screening.
Frequently Asked Questions (FAQs)
What is the purpose of the HRSA grant "Integrating Newborn Screening Long term Follow up into Primary Care Practices" (HRSA 13-213)?
This HRSA demonstration program supports efforts to integrate newborn screening (NBS) long-term follow-up (LTFU) activities into routine primary care workflows. The goal is to test whether primary care practices can realistically take on and sustain key long-term follow-up responsibilities, moving LTFU beyond isolated specialty settings and into the medical home.
What problem is this grant trying to solve?
While newborn screening has been effective at early identification of certain conditions, the opportunity notes that systematic evaluation of outcomes beyond long-term survival remains limited. This grant aims to strengthen the ability to collect, share, and use longer-term clinical and care-coordination data over time, with primary care serving as a central hub in coordination with public health follow-up systems.
What does "long-term follow-up (LTFU)" mean in the context of this opportunity?
In this opportunity, LTFU refers to ongoing activities after a child is identified through newborn screening, including coordinated care through a medical home, monitoring clinical outcomes over time, ensuring evidence-based treatment, continuous quality improvement in care delivery, and enabling learning through standardized data and potential research participation.
What framework or guidance is the program based on?
The program is grounded in a 2011 report from the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) titled "What Questions Should Newborn Screening Long term Follow up Be Able to Answer." Applicants are expected to structure the demonstration around the major LTFU domains emphasized in that framework.
What are the required long-term follow-up domains applicants must address?
The announcement highlights four major SACHDNC long-term follow-up domains that the demonstration should be organized around: care coordination, evidence-based treatment, continuous quality improvement, and new knowledge discovery.
What kinds of questions should participating primary care clinics be able to answer?
The opportunity describes primary-care-centered questions aligned with the SACHDNC framework, including whether children and adolescents receive coordinated care through a medical home, how they are doing clinically over time, whether NBS-identified children enrolled in care have better outcomes than those identified later through clinical presentation, whether primary care providers can assess and improve the care they deliver, and whether patients have opportunities to enroll in condition-related clinical research studies.
Is this grant about developing new newborn screening tests?
No. The opportunity is best understood as an implementation and systems-integration project. It focuses on proving that primary care practices, connected through regional genetics and public health networks, can coordinate care, track outcomes, support quality improvement, and contribute standardized data for long-term monitoring and research opportunities.
What role does primary care play in the demonstration program?
Primary care practices are positioned as the medical home and the everyday setting where long-term follow-up activities can be incorporated into routine workflows. The demonstration emphasizes coordinated, continuous care for children identified through NBS and reliable outcome information that can be shared with public health newborn screening follow-up programs.
How does the program relate to state newborn screening follow-up systems?
Applicants are expected to create functional links between primary care practices and state newborn screening follow-up systems. The intent is seamless, reliable follow-up for infants and children diagnosed through newborn screening and improved ability for public health systems to obtain consistent outcome information over time.
How many primary care practices must be involved?
The grantee is expected to establish collaborations with at least two primary care practices. Those practices must have at least one patient identified through newborn screening and/or be connected to a long-term follow-up network.
What types of primary care practices are mentioned as examples?
Examples include Community Health Centers, Federally Qualified Health Centers (FQHCs), or other primary care practices supported by HRSA's Bureau of Primary Health Care, working in coordination with state newborn screening systems.
Are there existing communication or network participation requirements?
Yes. Participating primary care practices and long-term follow-up networks must already have established communication channels and must be working within an established Regional Collaborative under HRSA's Genetic Services grantee network. This reflects the emphasis on building within existing regional systems rather than creating standalone projects.
Does the opportunity encourage using existing national infrastructure?
Yes. Applicants are strongly encouraged to build on existing national infrastructure rather than starting from scratch. The announcement specifically encourages use of NICHD's Newborn Screening Translational Research Network (NBSTRN), including its long-term follow-up database and common data elements, or alignment with other established NBS long-term follow-up projects.
What is NBSTRN and how is it relevant here?
The NICHD Newborn Screening Translational Research Network (NBSTRN) is referenced as a national infrastructure resource that includes a long-term follow-up database and common data elements. The grant encourages applicants to use or align with these tools to support standardized data collection and sharing for long-term follow-up.
Are informed consent or IRB requirements mentioned?
Yes. Because the demonstration involves patient information and may involve research participation, the opportunity emphasizes that appropriate informed consent and Institutional Review Board (IRB) processes must be followed wherever applicable.
What is a key deliverable expected from awardees?
A major deliverable is a feasibility assessment plan showing that participating clinics can produce concrete long-term follow-up metrics that map directly to the SACHDNC questions and domains.
What types of long-term follow-up metrics are described in the opportunity?
Examples of measures include: (1) the number of children identified by newborn screening and enrolled in care who have an individualized health or care-coordination plan that is updated regularly (reported both in total and by specific condition); (2) the number of children identified through NBS who are doing better than those identified clinically; (3) the number of NBS disorders for which best practices exist to guide ongoing disease management for children enrolled in care; and (4) the number of children identified through NBS who are enrolled in disorder-related clinical research.
Is the emphasis only on collecting data?
No. The opportunity emphasizes demonstrating that primary care can reliably generate accurate, ongoing data that is useful to public health departments and newborn screening long-term follow-up programs, not just collecting information for its own sake.
What agency administers this funding opportunity?
The opportunity is administered by the Health Resources and Services Administration (HRSA) and is described as a discretionary grant in the health category.
How many awards were anticipated and what is the funding limit?
The opportunity anticipated up to 3 awards, with an award ceiling of $110,000.
Is there a cost sharing or matching requirement?
No. The opportunity states there is no cost sharing or matching requirement.
What CFDA number is associated with this grant?
The CFDA number listed is 93.110, labeled as Maternal and Child Health Federal Consolidated Programs.
What are the key dates listed for this opportunity?
The posting date was December 20, 2012. The original and current closing date was February 19, 2013. The archive date was April 20, 2013.
Who is eligible to apply based on the information provided?
Eligibility is described broadly and includes states or political subdivisions of states, consortia of states or political subdivisions, territories, and certain health facilities or programs operated by or under contract/grant arrangements involving the Indian Health system (as reflected in the truncated eligibility text provided).
How does this grant define success at a high level?
Based on the description, success centers on whether primary care practices, working within established regional genetics and public health structures, can coordinate care, sustain long-term follow-up responsibilities, and generate standardized, meaningful long-term outcome and care-coordination information for children identified through newborn screening.
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