CDC's FAST FORWARD: Surveying Fragile X Lives for Better 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 goal is to make services better without adding extra paperwork or costs.
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Analyzed Economic Effects
3 provisions identified: 1 benefits, 2 costs, 0 mixed.
Who CAN Join the FAST FORWARD Study
The study will enroll people with fragile X syndrome (FXS) who have the full FMR1 mutation and are aged 40 years old or younger who attend the three U.S. clinics funded for this project. Each clinic will recruit a minimum of 200 eligible persons for a total of about 600 participants across all three sites.
Time You’ll Spend if You Participate
If you are a parent or caregiver responding for a participant, the online survey is estimated to take about 1 hour per respondent. CDC estimates 600 respondents and a total annual burden of 600 hours; there are no costs to respondents other than their time to participate.
Study Is Clinic-Based — Not Nationwide Enrollment
Enrollment is clinic-based and limited to people with FXS who attend the three CDC-funded U.S. clinics; people with FXS who do not attend those clinics are not part of this recruitment plan. The project will collect diagnosis, co-occurring conditions and behaviors, healthcare use, education and transition planning, caregiver supports, and related topics via online caregiver surveys.
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