Federal Register #30Day-26-0179

CDC FAST FORWARD Fragile X information collection and testing requests

This CDC notice concerns proposed Fragile X research data collection and related testing activities, not a purchase of products or services. - Government buyer: Department of Health and Human Services (HHS), Centers for Disease Control and Prevention (CDC). - Offices: National Center on Birth Defects and Developmental Disabilities; National Center for Chronic Disease Prevention and Health Promotion. - FAST FORWARD would enroll people aged 40 or younger with full mutation Fragile X Syndrome at three U.S. clinic sites, with at least 200 participants per site and 600 participants total. - Caregivers would complete online surveys covering diagnosis, health, services, education, transition planning, and related topics. - CDC estimates 200 annual burden hours. - A separate CDC information collection covers cognitive testing and pilot testing activities; it is described as a reinstatement request under OMB Control No. 0920-1291. - No OEMs, vendors, product purchases, or part-numbered products are identified.

Description

The Centers for Disease Control and Prevention submitted the information collection request “Focus on Advancing Support and Transition with the Fragile X Online Registry with Accessible Database (FAST FORWARD)” to the Office of Management and Budget for review and approval. The proposed project would enroll up to 600 eligible people with Fragile X syndrome across three U.S. clinic sites and collect information through online caregiver surveys. The survey covers diagnosis, co-occurring conditions, communication, healthcare and service needs, education, transition planning, social participation, caregiver supports, and related topics. CDC estimates 200 annual burden hours and invites public comments within 30 days of publication.

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