Understanding and Promoting Resources and Opportunities for People With Autism and Fragile X and Their Families Across the Lifespan

The goal of this NOFO is to gather unique information not collected by other federal programs to gain a better understanding of the resources (e.g., services, supports) and opportunities (e.g., education, employment, housing, social participation) needed to reduce morbidity, mortality, and economic impacts and improve other long-term outcomes for people with autism or Fragile X Syndrome (FXS) across the lifespan. CDC proposes to implement three components in this NOFO.

Component A: Survey to Promote Resources and Opportunities for aUtistic Teens and young adults (SPROUT) will utilize cohorts from the Study to Explore Early Development (SEED) Phases 1-3 (collected from 2007-2020), which were case-control studies of autism in children 2-5 years of age. Participants will range from about 10-25 years of age when this NOFO is awarded. SPROUT will be comprised of caregiver and self-report surveys intended to offer unique information on (1) service and support needs and the impact of co-occurring conditions on autistic people and their families and (2) the educational, transitional, social, and/or vocational needs and experiences of autistic adolescents and young adults. Information from these surveys will be used to improve the health and wellbeing of autistic people and their families. These activities are intended to provide data to inform ways to lessen individual, familial, and societal costs associated with autism, reduce morbidity and mortality, and improve health and well-being.

Component B: Focus on Advancing Support and Transition with the Fragile X Online Registry With Accessible Research Database (FAST FORWARD) awardees will employ clinic-based enrollment of eligible participants with a recruitment goal of at least 200 eligible persons with FXS per clinic. Similar to SPROUT, awardees will collect data on (1) timing of and barriers to diagnosis, (2) service and support needs and the impact of co-occurring conditions on people with FXS and their families and (3) the educational, transitional, social, and/or vocational needs and experiences of people with FXS and their families. Awardees will participate in project meetings, recruit participants, collect data, record data in a centralized platform, and produce quality public health products. These activities are intended to provide data to inform ways to lessen individual, familial, and societal costs associated with FXS, reduce morbidity and mortality, and improve health and well-being.

Component C: The purpose of this component is to disseminate quality public health products that can improve the health and wellbeing of people with FXS and their families. The awardee will participate in project meetings, develop materials, and disseminate materials to relevant audiences to strengthen the capacity among healthcare providers to appropriately support patients with FXS on a national level.