Opportunity Information: Apply for RFA DD 12 002
Apply for RFA DD 12 002
- The Centers for Disease Control and Prevention in the health sector is offering a public funding opportunity titled "A Pilot Surveillance System for High Impact/Low Prevalence Congenital and Inherited Conditions" and is now available to receive applicants.
- Interested and eligible applicants and submit their applications by referencing the CFDA number(s): 93.283 Centers for Disease Control and PreventionInvestigations and Technical Assistance.
- This funding opportunity was created on Jan 4, 2012 and posted on Jan 4, 2012.
- Applicants must submit their applications by Mar 2, 2012 Letter of Intent Due Date February 2, 2012 Application Due Date March 2, 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 $800,000.00 to eligible and selected applicants.
- Each selected applicant is eligible to receive up to $400,000.00 in funding.
- The number of recipients for this funding is limited to 1 candidate(s).
- Eligible applicants include: Others (see text field entitled Additional Information on Eligibility for clarification).
- Eligible Applicants Eligible Organizations Higher Education Institutions Public/State Controlled Institutions of Higher Education Private Institutions of Higher Education The following types of Higher Education Institutions are always encouraged to apply for CDC support as Public or Private Institutions of Higher Education Hispanic serving Institutions Historically Black Colleges and Universities (HBCUs) Tribally Controlled Colleges and Universities (TCCUs) Alaska Native and Native Hawaiian Serving Institutions Nonprofits Other Than Institutions of Higher Education Nonprofits (Other than Institutions of Higher Education) For Profit Organizations Small Businesses For Profit Organizations (Other than Small Businesses) Governments State Governments County Governments City or Township Governments Special District Governments Indian/Native American Tribal Governments (Federally Recognized) Indian/Native American Tribal Governments (Other than Federally Recognized) Eligible Agencies of the Federal Government U.S. Territory or Possession Other Independent School Districts Public Housing Authorities/Indian Housing Authorities Native American tribal organizations (other than Federally recognized tribal governments) Faith based or Community based Organizations Regional Organizations Bona Fide Agents A Bona Fide Agent is an agency/organization identified by the state as eligible to submit an application under the state eligibility in lieu of a state application. If applying as a bona fide agent of a state or local government, a legal, binding agreement from the state or local government as documentation of the status is required. Attach with Other Attachment Forms when submitting via www.grants.gov. Non domestic (non U.S.) Entities (Foreign Organizations) are not eligible to apply. Foreign (non U.S.) components of U.S. Organizations are not eligible.
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Opportunity Summary:
This CDC funding opportunity (RFA DD 12 002) supports a research project to design and pilot-test a practical surveillance system for congenital and inherited conditions that are relatively rare, but carry outsized health, social, and economic consequences in the United States. The central problem the announcement is trying to solve is that, unlike more common conditions that benefit from well-established reporting and tracking approaches, there is no single, coordinated system to reliably identify and describe people living with many low-prevalence, high-impact disorders over time. That gap makes it harder to understand how many people are affected, what their health needs look like across childhood and adulthood, what secondary complications emerge, and whether public health programs and clinical services are actually improving outcomes.
The project is framed as a feasibility and prototype effort. Rather than building a full national registry immediately, the awardee is expected to explore which combinations of systems and data sources could work together to find cases, characterize affected individuals, and track outcomes across the lifespan. The surveillance design is initially anchored on three conditions that represent different types of challenges and data-capture realities: spina bifida (a congenital neurological condition that often affects mobility and can involve complex medical care), muscular dystrophy (a group of inherited neuromuscular disorders with progressive functional impacts), and fragile X syndrome (an inherited condition that can affect cognition and behavior). By selecting these three, the CDC is signaling that the prototype should be flexible enough to handle very different clinical pathways, service systems, and documentation patterns, with the longer-term intent that the model could be adapted to other rare-but-serious conditions.
A major expected value of the pilot surveillance system is that it could help public health and healthcare stakeholders answer questions that are currently difficult to address consistently. The announcement highlights several use cases: describing basic epidemiology (how many people are affected, where they live, how demographics and geography shape burden), documenting secondary or associated health conditions, monitoring the reach and effectiveness of public health interventions over time, developing and refining strategies to detect new cases (including potential screening approaches), and generating evidence that can inform policies to improve healthcare delivery and coordination. Another explicit aim is to better understand differences and disparities in how these conditions affect various populations, which implies attention to equity, access to services, and uneven health outcomes.
Mechanically, this opportunity was offered as a discretionary cooperative agreement, meaning the CDC anticipated substantial involvement with the recipient during the project rather than a hands-off grant. The total estimated funding listed is $800,000, with an award ceiling of $400,000, and the CDC expected to make one award. There was no cost-sharing or matching requirement. The funding falls under CFDA 93.283 (CDC Investigations and Technical Assistance), aligning the project with applied public health research and systems development.
Eligibility was broad across U.S.-based organizations, reflecting the multidisciplinary nature of surveillance system design. Eligible applicants included public and private higher education institutions (with specific encouragement for institutions such as HBCUs, Hispanic-serving institutions, tribally controlled colleges and universities, and Alaska Native and Native Hawaiian-serving institutions), nonprofits, for-profit organizations (including small businesses), and multiple levels of government (state, county, city/township, special districts, tribal governments, U.S. territories/possessions), along with other entities like independent school districts, public housing authorities, and faith-based/community-based organizations. The announcement also allowed applications from bona fide agents applying on behalf of a state or local government, provided they submitted a legal, binding agreement documenting that status. Non-U.S. entities were not eligible, and foreign components of U.S. organizations were also excluded.
Key dates in the original posting show this was a time-limited competition in early 2012: it was posted January 4, 2012, with a letter of intent due February 2, 2012, and the application due March 2, 2012, after which it was archived April 1, 2012. For administrative help accessing the full announcement, the point of contact was the CDC Procurement and Grants Office (PGOTIM@cdc.gov, 770-488-2700).
Overall, the opportunity is best understood as an applied public health infrastructure pilot: it seeks to prove out methods for identifying and following people with rare but consequential congenital and inherited conditions, using integrated data approaches to support better measurement, better planning, and ultimately better health services and outcomes for affected individuals and their families.
Frequently Asked Questions (FAQs)
What is the name/identifier of this CDC funding opportunity?
This opportunity is identified as CDC RFA DD 12 002.
What is the main purpose of this funding opportunity?
The purpose is to support a research project to design and pilot-test a practical surveillance system for congenital and inherited conditions that are relatively rare but have major health, social, and economic consequences in the United States.
What problem is CDC trying to solve with this project?
The announcement focuses on the lack of a single, coordinated system to reliably identify and describe people living with many low-prevalence, high-impact congenital and inherited disorders over time. This gap limits the ability to understand how many people are affected, what needs they have across childhood and adulthood, what secondary complications arise, and whether public health programs and clinical services improve outcomes.
Is this intended to build a full national registry right away?
No. The project is framed as a feasibility and prototype effort. Rather than immediately creating a full national registry, the awardee is expected to explore which combinations of systems and data sources could work together to find cases, characterize individuals, and track outcomes across the lifespan.
Which conditions are used to anchor the initial surveillance design?
The surveillance design is initially anchored on three conditions: spina bifida, muscular dystrophy, and fragile X syndrome.
Why did CDC choose spina bifida, muscular dystrophy, and fragile X syndrome?
These conditions represent different types of challenges and different data-capture realities. By selecting them, CDC signals that the prototype should be flexible enough to handle varied clinical pathways, service systems, and documentation patterns, with the longer-term intent that the model could be adapted to other rare-but-serious conditions.
What kinds of questions should the pilot surveillance system help answer?
The announcement highlights several intended use cases, including describing basic epidemiology (how many people are affected, where they live, and how demographics and geography shape burden), documenting secondary or associated health conditions, monitoring the reach and effectiveness of public health interventions over time, developing and refining strategies to detect new cases (including potential screening approaches), and generating evidence that can inform policies to improve healthcare delivery and coordination.
Does the opportunity emphasize health equity or disparities?
Yes. An explicit aim is to better understand differences and disparities in how these conditions affect various populations, implying attention to equity, access to services, and uneven health outcomes.
What type of funding mechanism is this?
This opportunity was offered as a discretionary cooperative agreement, meaning CDC anticipated substantial involvement with the recipient during the project rather than a purely hands-off grant relationship.
How much funding is available under this opportunity?
The total estimated funding listed is $800,000. The award ceiling is $400,000, and CDC expected to make one award.
How many awards did CDC expect to make?
CDC expected to make one award.
Is there a cost-sharing or matching requirement?
No. The announcement states there was no cost-sharing or matching requirement.
What is the CFDA number for this opportunity?
The funding falls under CFDA 93.283, titled CDC Investigations and Technical Assistance.
Who is eligible to apply?
Eligibility was broad across U.S.-based organizations. Eligible applicants included public and private higher education institutions; nonprofits; for-profit organizations (including small businesses); and multiple levels of government (state, county, city/township, special districts, tribal governments, and U.S. territories/possessions). Other eligible entities listed included independent school districts, public housing authorities, and faith-based/community-based organizations.
Are any types of higher education institutions specifically encouraged?
Yes. The announcement specifically encouraged applications from institutions such as HBCUs, Hispanic-serving institutions, tribally controlled colleges and universities, and Alaska Native and Native Hawaiian-serving institutions.
Can a bona fide agent apply on behalf of a state or local government?
Yes. Applications from bona fide agents applying on behalf of a state or local government were allowed, provided the applicant submitted a legal, binding agreement documenting that status.
Are non-U.S. entities eligible?
No. Non-U.S. entities were not eligible.
Are foreign components of U.S. organizations allowed?
No. Foreign components of U.S. organizations were excluded.
What were the key dates for the competition?
The opportunity was posted on January 4, 2012. The letter of intent was due February 2, 2012. The application was due March 2, 2012. The opportunity was archived on April 1, 2012.
Where can applicants get administrative help accessing the full announcement?
The point of contact listed for administrative help was the CDC Procurement and Grants Office: PGOTIM@cdc.gov and 770-488-2700.
How should this opportunity be understood at a high level?
It is best understood as an applied public health infrastructure pilot. The intent is to prove out methods for identifying and following people with rare but consequential congenital and inherited conditions using integrated data approaches, supporting better measurement, better planning, and ultimately improved health services and outcomes for affected individuals and their families.
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