CDC's FAST FORWARD: Probing Fragile X Lives and Services
Published Date: 4/28/2026
Notice
Summary
The CDC wants your thoughts on a new project called FAST FORWARD, which will collect info about people with fragile X syndrome to improve health, education, and social services. This affects individuals with fragile X and those who support them. Comments are open until June 29, 2026, and the project aims to make services better without adding extra costs.
Analyzed Economic Effects
3 provisions identified: 1 benefits, 2 costs, 0 mixed.
CDC data project aims to improve services
The CDC's FAST FORWARD project will collect information about people with fragile X syndrome to better understand health, education, and social outcomes and gaps. The notice says this information will be used to improve health, education, and social services and to support people with FXS across the lifespan.
Participation limited to three clinics, age cap
Enrollment is clinic-based and limited to eligible people with full-mutation fragile X syndrome aged 40 years old or younger who attend the three U.S. clinics funded for the project. Each participating clinic will recruit a minimum of 200 eligible persons (approximately 40 per year) for a total of about 600 participants across the three sites.
Caregivers spend about 1 hour to respond
Data will be collected through online caregiver surveys; CDC estimates 600 responses per year, with an average burden of 1 hour per response and a total estimated 600 annual burden hours. The notice says there are no costs to respondents other than their time.
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