Rare Disorders: Research, Surveillance, Health Promotion, and Education
Active
- Assistance listing
- 93.315
- Agency
-
Centers for Disease Control and Prevention
Department of Health and Human Services
- Grant awards
- 48 $48,020,471 in federal obligations
Program facts
- Also known as
- Rare Disorders and Health Outcomes
- Assistance type
-
- Cooperative Agreement
- Treasury account
-
- 75-0958-1-1-550
Program details come from SAM.gov Assistance Listings. Updated . Grant award figures come from USAspending.gov.
About this program
The Department of Health and Human Services Centers for Disease Control and Prevention (CDC) funds surveillance, research, and health promotion for rare complex disabling conditions including muscular dystrophy, fragile X syndrome, and spina bifida through Assistance Listing 93.315, with the most recent grant awards disbursed on September 1, 2019.
Award activity has been uneven: the program distributed 48 cooperative agreements totaling $48 million in federal obligations across a span from 2014 to 2019, but no awards have been made in the past seven years. The portfolio shows heavy concentration in the early years—32 awards in 2014, followed by a sharp decline to 5 in 2015 and 1 in 2016, then a later cluster of 10 in 2019. All awards are Cooperative Agreements (100 percent of the portfolio). The CDC served as the sole funder across all 48 awards and $48 million obligated.
The program funds longitudinal population-based surveillance networks and research registries that track disease prevalence, natural history, health outcomes, and health care utilization for three main condition families. Recent awards support the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARNET), which operates in multiple states to identify muscular dystrophy cases and conduct epidemiologic research; the National Spina Bifida Patient Registry (NSBPR), which collects clinical and functional data from spina bifida clinics across the country; and the Fragile X Online Registry with Accessible Research Database (FORWARD), which maintains longitudinal data on individuals with fragile X syndrome to characterize natural history and support clinical trial design. Representative awards include $4.4 million to establish MD STARNET core sites (U01DD001255, 2019), $3.5 million for fragile X longitudinal data collection and analysis (U01DD001189, 2015), and $3.1 million for spina bifida collaborative care network development (U01DD001077, 2014). Typical award sizes range from approximately $100 thousand for specialized protocol components to $3–4 million for core surveillance and data coordinating centers.
Three grant opportunities were posted between December 2018 and January 2020: RFA-DD-19-002 (MD STARnet), due February 13, 2019; RFA-DD-19-001 (Spina Bifida care and outcomes), due February 13, 2019; and RFA-DD-15-003 (Fragile X longitudinal data), due February 20, 2020. All three solicited Cooperative Agreements. No open solicitations are currently visible in the source. The program accepts state and local governments, public and private nonprofit institutions, federally recognized tribal governments, and individuals and families affected by rare disorders as applicants.
Objective and description
- Objective
To (1) Promote public health capacity by conducting research to expand the knowledge base around people with complex disabling conditions, including muscular dystrophy, fragile X syndrome and spina bifida across the lifespan, with the goal of improvi
- Description
To (1) Promote public health capacity by conducting research to expand the knowledge base around people with complex disabling conditions, including muscular dystrophy, fragile X syndrome and spina bifida across the lifespan, with the goal of improving their health and quality of life; (2) apply lessons learned to design public health approaches for other childhood onset complex disabling conditions; (3) develop and disseminate information from surveillance and epidemiologic research, identifying intervention strategies for secondary conditions; (4) assess access to and costs associated with health care these conditions; (5) collaborate with partners in the public and private sector to support the development of standards of care and improve health care and related services for people with complex disabling conditions; (6) deliver technical assistance to public and private organizations, universities and local and state agencies on accessing factors affecting medical, functional, and psychosocial outcomes; (7) provide leadership in health education and promotion in people of all ages who have complex disabling conditions and their families; and (8) support partners in facilitating early identification of these diseases and adoption of effective interventions.
Eligibility
- Beneficiary eligibility
State; Local; Public nonprofit institution/organization; Federally Recognized Indian Tribal Governments; Individuals/Families affected by rare disorder/conditions; Private nonprofit institution/organizations, minority populations including Spanish speaking populations.
- Length and time phasing of assistance
Financial assistance is provided for a 12-month budget period with a period of performance of up to five years subject to the availability of funds and satisfactory progress of the recipient.
How to apply
- Criteria for selecting proposals
Applications will be evaluated on the review criteria described in the Notice of Funding Opportunity Announcements (NOFOs). In general, the review and selection process of complete and responsive applications to the NOFO consists of determination of the scientific and technical merit by objective or peer review, availability of funds, and relevance of program priorities and the priorities of CDC.
- Award procedure
After review and approval, a Notice of Award (NoA) will be prepared and processed, along with appropriate notification to the public. Initial awards provide funds for the first budget period (usually 12 months) and the NoA will indicate support recommended for the remainder of the project period, allocation of Federal funds by budget categories, award requirements, and special conditions, if any.
- Deadlines
Check Grants.gov for any relevant NOFO information regarding processes for applying for assistance.
- Renewals
Project period of performance is 1 to 5 years. After initial awards, and subject to availability of funds, projects may be continued non-competitively contingent upon satisfactory progress by the recipient (as documented in required reports) and the determination that continued funding is in the best interest of the Federal government.
Grant opportunities
Grant awards
Latest 10 of 48 listed here. See the rest on GovTribe.
Top recipients by federal obligations
| Rank | Recipient | Federal obligations | Share |
|---|---|---|---|
| 1 | Research Triangle Institute | $8,985,982 | 19% |
| 2 | Health Research, Inc. | $6,404,341 | 13% |
| 3 | University Of Utah | $5,968,457 | 12% |
| 4 | The University Of Iowa | $4,699,974 | 10% |
| 5 | Spina Bifida Association Of America, Inc. | $3,100,000 | 6% |
| 6 | South Carolina Department Of Public Health | $3,074,142 | 6% |
| 7 | Virginia Commonwealth University | $2,978,083 | 6% |
| 8 | Colorado Department Of Public Health & Environment | $2,421,510 | 5% |
| 9 | Research Foundation For Mental Hygiene Inc. | $1,666,697 | 3% |
| 10 | Research Foundation For Mental Hygiene, Inc. | $1,571,636 | 3% |
10 of 26 recipients listed here. See the rest on GovTribe.
Federal obligations by fiscal year
| Fiscal year | Federal obligations |
|---|---|
| FY2024 | $2,204,922 |
| FY2023 | $9,477,049 |
| FY2022 | $12,144,278 |
| FY2021 | $5,283,216 |
| FY2020 | $11,361,251 |
| FY2019 | $5,886,258 |
| FY2018 | $5,818,927 |
| FY2017 | $6,044,276 |
| FY2016 | $5,754,724 |
| FY2015 | $5,654,825 |
| FY2014 | $4,832,363 |
Show all 11
Quick answers
What is Assistance Listing 93.315?
Assistance Listing 93.315 is Rare Disorders: Research, Surveillance, Health Promotion, and Education, a federal grant program run by Centers for Disease Control and Prevention (Department of Health and Human Services).
What is the CFDA number for Rare Disorders: Research, Surveillance, Health Promotion, and Education?
Its CFDA number is 93.315: Assistance Listing numbers were called CFDA numbers before 2018.
How much funding has Assistance Listing 93.315 awarded?
48 grant awards under 93.315 have obligated $48,020,471 in federal funds to 26 recipients.
Who receives the most funding from 93.315?
The recipients obligated the most under Rare Disorders: Research, Surveillance, Health Promotion, and Education are Research Triangle Institute ($8,985,982), Health Research, Inc. ($6,404,341) and University Of Utah ($5,968,457).
Are there open grant opportunities under 93.315?
No opportunity listed under 93.315 is open now. The latest, Using Longitudinal Data to Characterize The Natural History of Fragile X Syndrome to Improve Service, was posted on January 22, 2020.
On GovTribe
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