Using Longitudinal Data to Characterize The Natural History of Fragile X Syndrome to Improve Service | RFA DD 15 0030601SUPP20

Opportunity Information: Apply for RFA DD 15 0030601SUPP20

The grant opportunity titled "Using Longitudinal Data to Characterize The Natural History of Fragile X Syndrome to Improve Service" (Funding Opportunity Number RFA DD 15 0030601SUPP20) is a discretionary federal funding announcement from the U.S. Department of Health and Human Services, Centers for Disease Control and Prevention (CDC). It uses a cooperative agreement funding instrument, which generally means the CDC expects to have substantial involvement during the project period, such as collaborating on technical decisions, data use, reporting expectations, and alignment with public health priorities. The opportunity falls under the health funding activity category and is associated with CFDA number 93.315.

The core purpose of the opportunity is to strengthen understanding of the natural history of fragile X syndrome (FXS) across the lifespan by leveraging longitudinal data. In practical terms, this means using repeated observations of individuals with FXS over time to describe how the condition develops and changes from childhood through adolescence and into adulthood. By characterizing typical trajectories and variability across individuals, the resulting evidence can help inform better planning and delivery of services, guide families and providers, and identify points in life when certain supports or interventions may be especially important.

A major emphasis of the announcement is improving participation in the longitudinal database among groups that are often underrepresented in research. Specifically, the FOA highlights the need to explore effective strategies to increase enrollment and retention of minority populations, underserved communities, and adults living with FXS. This reflects a recognition that longitudinal datasets can be biased when certain groups are missing, and that improving representativeness is essential for producing findings that are useful and equitable in real-world service systems. Work under this goal would typically focus on identifying barriers to participation, building trust and outreach channels, reducing practical burdens (transportation, time, technology access), and developing culturally responsive recruitment and engagement approaches that sustain long-term involvement.

The opportunity also calls for testing approaches to measure cognitive and behavioral function in the FXS population. Because FXS can involve a wide range of intellectual, learning, social, and behavioral features, standardized measurement can be challenging, especially across different ages and ability levels. The FOA is therefore oriented toward evaluating and refining assessment methods that are feasible, reliable, and meaningful for people with FXS, including measures that can be applied consistently over time. This measurement focus supports the broader natural history goal by ensuring that the outcomes tracked in the longitudinal database capture real changes in cognition and behavior and can be used to evaluate service needs and outcomes.

Administratively, the opportunity was created on January 22, 2020, with an original closing date of February 20, 2020. The expected number of awards is listed as one, suggesting a single recipient organization would be selected to carry out the work under this announcement. The award ceiling is listed as 0, which typically indicates that a specific maximum amount was not provided in the summary fields and would need to be confirmed in the full announcement or related budget guidance. Eligibility is listed as "Others (see text field entitled Additional Information on Eligibility for clarification)," indicating that eligibility criteria are defined in the full FOA rather than in the brief summary and may include specific types of organizations or institutions that meet CDC requirements.

Overall, this funding opportunity is designed to strengthen the evidence base around how fragile X syndrome unfolds over time, make the underlying longitudinal dataset more inclusive and representative of the full FXS community, and improve the tools used to track cognitive and behavioral functioning so that findings can translate into better services and supports across the lifespan.

• The Department of Health and Human Services, Centers for Disease Control and Prevention - ERA in the health sector is offering a public funding opportunity titled "Using Longitudinal Data to Characterize The Natural History of Fragile X Syndrome to Improve Service" and is now available to receive applicants.
• Interested and eligible applicants and submit their applications by referencing the CFDA number(s): 93.315.
• This funding opportunity was created on Jan 22, 2020.
• Applicants must submit their applications by Feb 20, 2020. (Agency may still review applications by suitable applicants for the remaining/unused allocated funding in 2026.)
• 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).

Apply for RFA DD 15 0030601SUPP20

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