Understanding and Promoting Resources and Opportunities for People with Autism and Fragile X and their Families Across the Lifespan
Grant Opportunity Analysis
The Centers for Disease Control and Prevention’s National Center on Birth Defects and Developmental Disabilities is seeking a cooperative agreement to better understand and promote resources and opportunities for people with autism and Fragile X syndrome across the lifespan. The work is organized into three components: autism data collection and dissemination through SPROUT, Fragile X data collection through FAST FORWARD, and Fragile X resource development and dissemination to support patients, families, and healthcare providers. Key requirements include documented access to SEED participant contact data for the autism component, clinic-based access to children and adults with Fragile X full mutation for the data collection component, and the ability to reach Fragile X communities nationally for dissemination activities. Applications are due June 15, 2026, with up to 11 awards and $18,000,000 in total program funding available, and electronic submissions must be received by 11:59 p.m. ET on the due date.
Eligible Applicants
Component A (Autism Data Collection and Dissemination): Applicants must have documented access to individual contact and eligibility data from participants in the Study to Explore Early Development (SEED) phases 1, 2, and/or 3 for all cohorts they propose to include in their recruitment pool to ensure successful completion of the data collection outlined in Component A of the NOFO. Therefore, applicants must either: 1) be the original entities that collected the original SEED data on children 2-5 years of age and their parents/caregivers, and therefore have the information needed to reach these individuals for the Survey to Promote Resources and Opportunities for aUtistic Teens and young adults (SPROUT); OR 2) have established collaborative agreements to work with the entities that originally collected contact information from SEED participants (i.e., former SEED recipients) so that they can reach the SEED participants for the data collection as outlined in Component A of the NOFO.Component B (Fragile X Data Collection): Applicants must provide evidence of access to clinic-based samples of children, adolescents, and adults (ages 0-40 years) with fragile X syndrome (FXS) full mutation diagnosis and demonstrate their ability and capacity to collect data on a minimum of 200 unique individuals in this population as outlined in Component B of the NOFO.Component C (Fragile X Data Dissemination): Applicants must demonstrate their ability and capacity to identify and reach populations of people with FXS and their families and communities, as well as healthcare providers, particularly those treating FXS patients, across the United States. Applicants must also demonstrate their ability to generate new communication and continually identify and update resources for the target populations, and well as quantify metrics of impact. Their history of outreach to these populations should include (but may not be limited to) evidence-based educational information, resources, and support.