Centers for Disease Control and Prevention Seeks Public Comment on Fragile X Syndrome Information Collection Request

On November 2 2026 the Centers for Disease Control and Prevention published a notice in the Federal Register announcing its submission of an information collection request to the Office of Management and Budget. The project is titled Focus on Advancing Support and Transition with the Fragile X Online Registry with Accessible Database or FAST FORWARD. This regulatory action complies with the Paperwork Reduction Act of 1995 which requires federal agencies to seek public input and executive branch approval before conducting standardized information collections from the public.

Background on Fragile X Syndrome and Federal Surveillance

Fragile X Syndrome is a genetic disorder caused by alterations in the FMR1 gene which disrupts the production of a protein necessary for typical brain development. It represents the most common known cause of inherited intellectual disability and monogenic autism. Medical and developmental features include seizures speech disorders and attention deficit hyperactivity disorder. Federal involvement in tracking this condition spans nearly two decades beginning with pilot infrastructures in 2008 and evolving through successive iterations including the FORWARD registry established in 2015.

The current information collection request aligns with congressional guidance accompanying the 2026 Consolidated Appropriations Act. Lawmakers encouraged the agency to support strategies that promote earlier identification of children with the condition and ensure affected populations receive proper diagnoses and service awareness across their lifespans.

Methodology and Scope of the Proposed Collection

The FAST FORWARD initiative targets clinic-based enrollment of participants aged 40 years old or younger who possess a full mutation of the condition. Three funded United States sites will each recruit a minimum of 200 eligible individuals yielding a total sample size of 600 participants. Data gathering will occur via online surveys completed by parents or caregivers. The inquiry encompasses a broad array of categories including medical diagnosis co-occurring behaviors healthcare utilization education transition planning caregiver supports and participant strengths.

According to agency estimates the project will involve 200 respondents annually with each response taking approximately one hour to complete resulting in 200 burden hours. Respondents face no financial costs beyond the time required to participate.

Public Comment Process and Next Steps

The publication initiates a 30-day public comment period following an initial notice published on April 28 2026 which drew two public responses. The Office of Management and Budget is specifically interested in feedback evaluating the necessity of the data collection the accuracy of the burden estimates methods for enhancing information quality and techniques for minimizing respondent burden. Interested parties may submit comments through the federal rulemaking portal or directly to the designated agency desk officer in Washington before the deadline.