Opportunity Information: Apply for HRSA 12 139
Apply for HRSA 12 139
- The Health Resources and Services Administration in the health sector is offering a public funding opportunity titled "National Coordinating Center for the Regional Genetic Services Collaboratives" 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 Feb 29, 2012 and posted on Feb 29, 2012.
- Applicants must submit their applications by Mar 30, 2012. (Agency may still review applications by suitable applicants for the remaining/unused allocated funding in 2026.)
- The funding agency has allocated a total of $1,300,000.00 to eligible and selected applicants.
- The number of recipients for this funding is limited to 1 candidate(s).
- Eligible applicants include: Nonprofits having a 501(c)(3) status with the IRS, other than institutions of higher education State governments City or township governments Special district governments Independent school districts County governments Others (see text field entitled Additional Information on Eligibility for clarification) Small businesses For profit organizations other than small businesses Native American tribal organizations (other than Federally recognized tribal governments).
- As cited in 42 CFR Part 51a.3 (a), any public or private entity, including an Indian tribe or tribal organization (as those terms are defined at 25 U.S.C. 450b) is eligible to apply. Faith based and community based organizations are also eligible to apply. Applicants must have significant familiarity and/or experience with clinical genetics, quality assessment and improvement, public health, and primary care and collaboration with public health and community programs, professional organizations, and State and Federal agencies, as well as other programs and organizations for individuals with heritable disorders and their families. Any applicant that can serve in a national capacity to coordinate services among the regional collaborative activities is eligible to apply. Applicants may NOT apply concurrently as the primary applicant for funding as both the National Coordinating Center (HRSA 12 139) and a Regional Genetic Services Collaborative (HRSA 12 138). If an applicant does apply for both funding opportunities, they will be considered non responsive and both applications will be disqualified.
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Opportunity Summary:
The National Coordinating Center for the Regional Genetic Services Collaboratives (HRSA-12-139) is a Health Resources and Services Administration (HRSA) cooperative agreement designed to strengthen how public health and health care systems serve newborns, children, and families affected by, or at risk for, heritable disorders. The program sits within the Maternal and Child Health Bureau (CFDA 93.110) and focuses on improving the capacity of state and local public health agencies by connecting them with academic, clinical, and community-based partners who can support screening, genetic counseling, and ongoing health care services. In practical terms, HRSA is funding one national-level organization to act as the hub that coordinates, aligns, and evaluates the work happening across the Regional Genetic Services Collaboratives so that families experience more consistent access to high-quality genetic services and follow-up care regardless of geography.
At the center of the opportunity is the expectation that the National Coordinating Center (NCC) will help the Regional Collaboratives function as a coherent national network rather than a set of disconnected regional projects. The NCC is expected to provide a model for strengthening communication, partnerships, and collaboration among key groups: public health agencies, families and consumer organizations, primary care providers, and genetics and other subspecialty clinicians. A major emphasis is making sure care is delivered within a "medical home" framework, meaning care should be accessible, family-centered, continuous over time, comprehensive, coordinated across services, compassionate, and culturally effective across the life course. In other words, the NCC is not just coordinating administrative activity; it is expected to drive practical improvements in how individuals with genetic conditions and their families find expertise, navigate services, and receive coordinated ongoing care.
A major deliverable built into the grant is the creation of a robust evaluation and continuous improvement infrastructure. The NCC must develop and implement an evaluation program that uses both quantitative and qualitative methods to measure outcomes from projects undertaken by the Regional Collaboratives as well as the NCC itself. This is not a one-time report; the announcement calls for a learning collaborative approach and ongoing analysis of results, changes, and outcomes over time. In addition, the awardee must conduct or contract out a quality assessment educational program based on the learning collaborative model, with meetings occurring at least annually. The intent is to make measurement and shared learning a regular part of how the national-regional network operates, so that promising practices spread and weaker approaches are improved or replaced.
Another defining feature of the opportunity is its health information technology and standards component. The NCC is expected to develop electronic medical record (EMR) specifications for clinical genetic patient care by working with the National Library of Medicine and EMR vendors to translate up-to-date clinical guidelines for genetic conditions into implementable system specifications. These specifications are intended for developers and vendors and must clearly describe system requirements and options, including when clinical decision support should be triggered. Importantly, the awardee is responsible for thoroughly researching clinical guidelines to ensure the specifications reflect current best evidence. The resulting specifications are not purely theoretical; they must be tested and validated by the Regional Genetics and Newborn Screening Collaboratives, tying the informatics work back to real-world clinical and public health settings.
Data harmonization and newborn screening follow-up infrastructure are also central. The NCC is expected to support continued development of datasets used for newborn screening follow-up, along with data dictionaries and a common ontology that can be used across electronic medical records and registries. This reflects a broader national need in genetics and newborn screening: consistent definitions and interoperable data elements so outcomes can be tracked, quality can be compared across settings, and care coordination can occur more reliably when patients move between systems or providers. By pushing common data standards and shared vocabularies, HRSA is aiming to reduce fragmentation and make follow-up and long-term management more measurable and consistent.
The NCC is also expected to coordinate actively with other intersecting HRSA and MCHB-funded efforts, rather than duplicating them. The announcement highlights collaboration with programs such as the National Newborn Screening Technical Assistance and Data Repository, the National Coordinating Center for Regional Hemophilia Networks, the National Consumer Center for Genetics Resources and Services, and the Clearinghouse of Newborn Screening Information. Beyond HRSA-funded partners, the NCC is encouraged to build partnerships with federal and non-federal stakeholders to develop innovative approaches to data collection, quality improvement, and educational outreach. The overarching expectation is that the NCC serves as connective tissue across multiple initiatives that touch genetics, newborn screening, and family support, helping align goals, share tools, and reduce silos.
A large consumer engagement and education component is built into the scope through the creation of a National Genetics Education and Consumer Network. This network is meant to help consumers (individuals, parents, and families) access quality information and education so they can make informed health care decisions. It must also actively engage consumer groups, creating opportunities for peer or mentor connections and supportive networks, including educational and faith-based settings where appropriate. The program stresses leadership development and meaningful participation of families and consumer organizations in decision-making, program policy development, and community and state organizing efforts that improve childrens health and developmental outcomes. The network is also expected to act as a bridge between consumers and existing HRSA-supported resources, including Family-to-Family Health Information Centers, national technical assistance centers and clearinghouses, and the genetics regional collaboratives. Dissemination is expected to include product development at appropriate literacy levels when gaps are identified, and the announcement explicitly notes that expanding internet access should be balanced with personal outreach to avoid worsening disparities for communities with less digital access or lower connectivity.
Operationally, the awardee must also support coordination logistics for the national network. At minimum, the NCC must hold and fund the logistical costs for one joint meeting per year for the NCC and Regional Collaborative project directors in the Washington, DC area, with attendance by HRSA project officers and staff. This requirement signals that HRSA expects ongoing federal involvement typical of a cooperative agreement and wants structured, regular opportunities for alignment, accountability, and shared planning among the key leaders of the initiative.
In terms of funding and award structure, the opportunity is a discretionary cooperative agreement with an estimated total funding level of $1.3 million and an expected number of awards of one, meaning a single organization would be selected to run the NCC nationally. There is no cost sharing or matching requirement listed. The opportunity was posted on February 29, 2012, with an application closing date of March 30, 2012, and an archive date of May 29, 2012, indicating it is a historical funding announcement rather than an open competition today, but the program design and requirements remain informative for understanding HRSA expectations for national coordination in genetics services.
Eligibility is broad and includes many public and private entities: nonprofit organizations with 501(c)(3) status (excluding institutions of higher education as a category, though universities may still participate depending on structure), state and local governments, special districts, independent school districts, county governments, tribal organizations (including Indian tribes or tribal organizations as defined in federal law), faith-based and community-based organizations, and for-profit organizations including small businesses. Applicants must demonstrate substantial familiarity and experience with clinical genetics, quality assessment and improvement, public health and primary care, and collaboration with public health and community programs, professional organizations, and state and federal agencies, specifically in contexts serving individuals with heritable disorders and their families. The applicant must be able to operate in a national capacity coordinating regional activities. A key restriction is that an organization cannot apply as the primary applicant for both this NCC opportunity (HRSA-12-139) and the companion Regional Genetic Services Collaborative opportunity (HRSA-12-138); applying for both would make the applications non-responsive and lead to disqualification.
Overall, this grant opportunity is built around a national coordination role that blends network leadership, standards and informatics development, consumer education and engagement, data and evaluation infrastructure, and cross-program collaboration. The intended outcome is a more connected and equitable genetics services ecosystem in which newborn screening follow-up, genetic expertise, and family-centered care are better coordinated, better measured, and easier for families and providers to access and navigate.
FAQs: National Coordinating Center for the Regional Genetic Services Collaboratives (HRSA-12-139)
What is HRSA-12-139?
HRSA-12-139 is a Health Resources and Services Administration (HRSA) cooperative agreement to fund a National Coordinating Center (NCC) that strengthens how public health and health care systems serve newborns, children, and families affected by, or at risk for, heritable disorders. The NCC is designed to coordinate, align, and evaluate work across the Regional Genetic Services Collaboratives so genetic services and follow-up care are more consistent nationwide.
Which HRSA bureau and CFDA program is associated with this opportunity?
The program sits within HRSA's Maternal and Child Health Bureau (MCHB) and is associated with CFDA 93.110.
What is the main purpose of the National Coordinating Center (NCC)?
The NCC is meant to function as a national hub that helps the Regional Genetic Services Collaboratives operate as a coherent network rather than separate regional efforts. The focus is on practical improvements in access to high-quality genetic services, effective follow-up, and coordinated ongoing care regardless of geography.
How is this different from funding regional projects directly?
Instead of funding multiple organizations to run separate regional projects under this specific announcement, HRSA-12-139 funds one national-level organization to coordinate, align, and evaluate the collective work of the regional collaboratives, support shared tools and standards, and spread effective approaches across regions.
How many awards were expected under this funding opportunity?
The opportunity anticipated a single award (one organization selected) to run the NCC at the national level.
What was the estimated total funding level?
The estimated total funding level was $1.3 million.
Is cost sharing or matching required?
No cost sharing or matching requirement is listed for this opportunity.
What type of award mechanism is this?
This is a discretionary cooperative agreement. The structure signals active federal involvement (typical of cooperative agreements), including required joint meetings with HRSA participation.
Who is the program intended to benefit?
The program is designed to improve systems serving newborns, children, and families affected by, or at risk for, heritable disorders, with an emphasis on better screening connections, genetic counseling, and ongoing health care services delivered in a coordinated way.
What does HRSA expect the NCC to improve in real-world terms?
HRSA expects the NCC to drive practical improvements in how individuals with genetic conditions and their families find expertise, navigate services, and receive coordinated, ongoing care across settings and over time.
What key groups is the NCC expected to connect and coordinate?
The NCC is expected to strengthen communication, partnerships, and collaboration among public health agencies, families and consumer organizations, primary care providers, and genetics and other subspecialty clinicians.
What is meant by a "medical home" framework in this announcement?
The medical home framework is described as care that is accessible, family-centered, continuous over time, comprehensive, coordinated across services, compassionate, and culturally effective across the life course. The NCC is expected to promote genetics services and follow-up care that align with these characteristics.
What are the evaluation expectations for the NCC?
The NCC must develop and implement a robust evaluation and continuous improvement infrastructure using both quantitative and qualitative methods. Evaluation is expected to measure outcomes from projects undertaken by the Regional Collaboratives as well as the NCC itself, with ongoing analysis of results, changes, and outcomes over time.
Is evaluation described as a one-time reporting task?
No. The announcement calls for a learning collaborative approach and ongoing analysis, meaning evaluation is intended to be continuous and used to support shared learning and improvement.
What is the required quality assessment educational program?
The awardee must conduct or contract out a quality assessment educational program based on the learning collaborative model. Meetings must occur at least annually, supporting routine measurement, shared learning, and improvements across the national-regional network.
What health information technology (health IT) work is required?
The NCC is expected to develop electronic medical record (EMR) specifications for clinical genetic patient care. This includes working with the National Library of Medicine and EMR vendors to translate up-to-date clinical guidelines for genetic conditions into implementable system specifications.
What should the EMR specifications include?
The specifications are intended for developers and vendors and must clearly describe system requirements and options, including when clinical decision support should be triggered.
How does HRSA expect the NCC to ensure EMR specifications reflect best evidence?
The awardee is responsible for thoroughly researching clinical guidelines to ensure the specifications reflect current best evidence.
Do the EMR specifications need to be tested in real settings?
Yes. The specifications must be tested and validated by the Regional Genetics and Newborn Screening Collaboratives, linking the informatics deliverables back to practical clinical and public health use.
What is the role of datasets, data dictionaries, and ontology in this opportunity?
The NCC is expected to support continued development of datasets used for newborn screening follow-up, along with data dictionaries and a common ontology that can be used across electronic medical records and registries. The goal is more consistent definitions and interoperable data elements for tracking outcomes and supporting quality comparisons and care coordination.
Why is data harmonization emphasized?
Consistent definitions and shared vocabularies help reduce fragmentation, improve measurement of outcomes and long-term management, and make follow-up and care coordination more reliable across different systems and providers.
What coordination with other HRSA or MCHB-funded programs is expected?
The NCC is expected to coordinate actively with intersecting HRSA and MCHB-funded efforts to avoid duplication. The announcement highlights collaboration with programs such as the National Newborn Screening Technical Assistance and Data Repository, the National Coordinating Center for Regional Hemophilia Networks, the National Consumer Center for Genetics Resources and Services, and the Clearinghouse of Newborn Screening Information.
Are partnerships beyond HRSA-funded programs encouraged?
Yes. The NCC is encouraged to build partnerships with federal and non-federal stakeholders to develop innovative approaches to data collection, quality improvement, and educational outreach.
What is the National Genetics Education and Consumer Network?
It is a consumer engagement and education component within the NCC scope. The network is meant to help consumers (individuals, parents, and families) access quality information and education to support informed health care decisions, while also creating opportunities for peer or mentor connections and supportive networks.
What kinds of settings can be involved in consumer education and outreach?
The announcement notes outreach can include educational and faith-based settings where appropriate, in addition to connections with consumer groups and supportive networks.
How are families and consumer organizations expected to participate?
The program stresses leadership development and meaningful participation of families and consumer organizations in decision-making, program policy development, and community and state organizing efforts that improve children's health and developmental outcomes.
How should the NCC connect consumers to existing HRSA-supported resources?
The consumer network is expected to act as a bridge to HRSA-supported resources such as Family-to-Family Health Information Centers, national technical assistance centers and clearinghouses, and the genetics regional collaboratives.
What does the announcement say about internet access and disparities?
It explicitly notes that expanding internet access should be balanced with personal outreach to avoid worsening disparities for communities with less digital access or lower connectivity.
Are there required meetings for coordination with HRSA and regional leaders?
Yes. At minimum, the NCC must hold and fund the logistical costs for one joint meeting per year for the NCC and Regional Collaborative project directors in the Washington, DC area, with attendance by HRSA project officers and staff.
What does the annual Washington, DC area meeting requirement imply about HRSA's role?
It signals ongoing federal involvement and structured opportunities for alignment, accountability, and shared planning among initiative leaders, which is typical under a cooperative agreement.
Who is eligible to apply for this opportunity?
Eligibility is broad and includes nonprofit organizations with 501(c)(3) status (excluding institutions of higher education as a category), state and local governments, special districts, independent school districts, county governments, tribal organizations (including Indian tribes or tribal organizations as defined in federal law), faith-based and community-based organizations, and for-profit organizations including small businesses.
Are institutions of higher education eligible?
The announcement notes nonprofits with 501(c)(3) status are eligible while "excluding institutions of higher education as a category," though universities may still participate depending on structure. The eligibility statement in the description indicates higher education is not listed as its own eligible category.
What experience must an applicant demonstrate?
Applicants must demonstrate substantial familiarity and experience with clinical genetics, quality assessment and improvement, public health and primary care, and collaboration with public health and community programs, professional organizations, and state and federal agencies, specifically in contexts serving individuals with heritable disorders and their families. The applicant must be able to operate in a national capacity coordinating regional activities.
Can an organization apply for both this NCC opportunity (HRSA-12-139) and the companion regional opportunity (HRSA-12-138)?
No. An organization cannot apply as the primary applicant for both HRSA-12-139 and HRSA-12-138. Applying as the primary applicant to both would make the applications non-responsive and lead to disqualification.
Is this an open grant competition today?
The opportunity was posted February 29, 2012, with a closing date of March 30, 2012, and an archive date of May 29, 2012. Based on these dates, it is a historical funding announcement rather than an open competition today.
What were the key dates listed in the announcement?
Posted date: February 29, 2012. Application closing date: March 30, 2012. Archive date: May 29, 2012.
What are the major required components of the NCC role?
Major components include national network coordination across regional collaboratives; partnership development across public health, clinical providers, and families/consumers; promotion of a medical home approach; evaluation and continuous improvement using quantitative and qualitative methods; a learning-collaborative-based quality assessment educational program with at least annual meetings; EMR specifications and related clinical decision support guidance tied to current evidence; testing and validation of specifications through regional collaboratives; data harmonization efforts for newborn screening follow-up including datasets, data dictionaries, and a common ontology; and coordination with other HRSA and MCHB-funded programs and additional stakeholders.
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