This grant aims to comprehensively characterize the natural history of Fragile X Syndrome (FXS) and identify meaningful intervention outcome measures. Funding will support research focused on improving the lives of children and adolescents aged 6-19 years with full-mutation FXS, including those with co-occurring Autism Spectrum Disorder (ASD). Participants, potentially including existing FORWARD registry members, will undergo in-person standardized assessments to gather data on cognitive, behavioral, and adaptive skills, and overall functioning. This initiative will facilitate comparisons of health and functional outcomes for the FXS population with other conditions like ASD, through coordination with the CDC’s SEED Follow-up Study. Applicants can recruit from individual or multiple FORWARD clinics.
Opportunity ID: 328398
General Information
| Document Type: | Grants Notice |
| Funding Opportunity Number: | RFA-DD-21-002 |
| Funding Opportunity Title: | Characterizing the Natural History of Fragile X Syndrome to Inform the Development of Intervention Outcome Measures |
| Opportunity Category: | Discretionary |
| Opportunity Category Explanation: | – |
| Funding Instrument Type: | Cooperative Agreement |
| Category of Funding Activity: | Health |
| Category Explanation: | – |
| Expected Number of Awards: | 1 |
| Assistance Listings: | 93.073 — Birth Defects and Developmental Disabilities – Prevention and Surveillance |
| Cost Sharing or Matching Requirement: | No |
| Version: | Synopsis 1 |
| Posted Date: | Nov 05, 2020 |
| Last Updated Date: | Nov 05, 2020 |
| Original Closing Date for Applications: | Jan 11, 2021 Electronically submitted applications must be submitted no later than 11:59 p.m., ET, on the listed application due date. |
| Current Closing Date for Applications: | Jan 11, 2021 Electronically submitted applications must be submitted no later than 11:59 p.m., ET, on the listed application due date. |
| Archive Date: | Feb 10, 2021 |
| Estimated Total Program Funding: | $4,000,000 |
| Award Ceiling: | $800,000 |
| Award Floor: | $0 |
Eligibility
| Eligible Applicants: | Unrestricted (i.e., open to any type of entity above), subject to any clarification in text field entitled “Additional Information on Eligibility” |
| Additional Information on Eligibility: |
Additional Information
| Agency Name: | Centers for Disease Control and Prevention – ERA |
| Description: | The purpose of this NOFO is to conduct research to better characterize the natural history of fragile X syndrome (FXS) and meaningful outcome measures in order to improve the lives of children and adolescents with FXS with and without autism spectrum disorder (ASD). The funding will support enrollment and in-person standardized assessments of individuals aged 6 through 19 years with full-mutation FXS, which can include new and previously enrolled study participants of the Fragile X Online Registry with Accessible Research Database (FORWARD). FORWARD is a national registry of patients enrolled in FXS specialty clinics who are part of the Fragile X Clinical and Research Consortium. Data collection will include assessments to characterize the cognitive, behavioral, and adaptive skills, and other indicators of functioning of individuals with FXS. Planned coordination of standardized in-person behavioral and functional assessments and follow-up telephone survey questionnaires with CDC’s Study to Explore Early Development (SEED) Follow-up Study (RFA-DD21-001) will facilitate comparison of health and functional outcomes for the FXS population with those for other related and frequently co-occurring conditions such as ASD and developmental delay. Applicants may propose recruiting study participants from an individual FORWARD clinic, or recruiting from a group of FORWARD clinics with which the principal investigator has documented data sharing and collaborative agreements. |
| Link to Additional Information: | – |
| Grantor Contact Information: | If you have difficulty accessing the full announcement electronically, please contact:
Dionne Godette
qal6@cdc.gov Email:qal6@cdc.gov |
Version History
| Version | Modification Description | Updated Date |
|---|---|---|
Related Documents
Folder 328398 Full Announcement-FULL_ANNOUNCEMENT -> RFA-DD-21-002 Final.pdf
Packages
| Agency Contact Information: | Dionne Godette qal6@cdc.gov Email: qal6@cdc.gov |
| Who Can Apply: | Organization Applicants |
| Assistance Listing Number | Competition ID | Competition Title | Opportunity Package ID | Opening Date | Closing Date | Actions |
|---|---|---|---|---|---|---|
| 93.073 | RFA-DD-21-002 | Characterizing the Natural History of Fragile X Syndrome to Inform the Development of Intervention Outcome Measures | PKG00264013 | Nov 05, 2020 | Jan 11, 2021 | View |
Package 1
Mandatory forms
328398 RR_SF424_2_0-2.0.pdf
328398 RR_Budget_1_4-1.4.pdf
328398 PHS398_ResearchPlan_4_0-4.0.pdf
328398 PHS398_CoverPageSupplement_5_0-5.0.pdf
328398 RR_OtherProjectInfo_1_4-1.4.pdf
328398 PerformanceSite_2_0-2.0.pdf
328398 RR_KeyPersonExpanded_2_0-2.0.pdf
328398 PHSHumanSubjectsAndClinicalTrialsInfo_2_0-2.0.pdf
Optional forms
328398 RR_SubawardBudget30_1_4-1.4.pdf
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