Federal Register #60Day-26-0179

CDC Solicitation for Data Collection Services: Fragile X Registry and Miner X-Ray Surveillance

The Centers for Disease Control and Prevention (CDC), under the Department of Health and Human Services, is seeking public and federal agency comments on two proposed public health data collection projects: - FAST FORWARD (Fragile X Online Registry with Accessible Database): - Clinic-based enrollment of 600 participants aged 40 or younger with full mutation Fragile X Syndrome (FXS) across three U.S. clinics - Data collected via online caregiver surveys covering diagnosis, co-occurring conditions, healthcare utilization, education, and social participation - Focus on identifying health outcomes, service gaps, and barriers to care for individuals with FXS - X-Ray Classification Collection for Metal and Nonmetal Miners: - Collection of de-identified chest radiograph classification data from medical providers for approximately 13,500 miners - Supports public health surveillance and compliance with Mine Safety and Health Administration (MSHA) regulations - Key Details: - No specific products, part numbers, or OEMs are requested; this is a request for data collection services - Emphasis on data integrity and confidentiality throughout both projects - The CDC's National Center on Birth Defects and Developmental Disabilities (NCBDDD) and National Institute for Occupational Safety and Health (NIOSH) are the primary sub-agencies involved - The CDC office at 1600 Clifton Road NE, Atlanta, Georgia, is the main contracting and government facility

Description

The Centers for Disease Control and Prevention (CDC) invites public and federal agency comments on a proposed information collection project titled Focus on Advancing Support and Transition with the Fragile X Online Registry With Accessible Database (FAST FORWARD). This surveillance project aims to better understand health, educational, and social outcomes, service gaps, and barriers to healthcare among people with fragile X syndrome (FXS). The project involves clinic-based enrollment of participants aged 40 or younger with FXS from three U.S. clinics, collecting data via online caregiver surveys. The CDC requests comments by June 29, 2026, and estimates 600 annual burden hours for this data collection.

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