Description
The goal of this funding opportunity is to gather unique information to gain a better understanding of the resources and opportunities needed to reduce morbidity, mortality, and economic impacts and improve long-term outcomes for people with autism or Fragile X Syndrome (FXS) across the lifespan. The Centers for Disease Control and Prevention (CDC) proposes to implement three components:
• 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) to collect data on service and support needs, educational, transitional, social, and/or vocational needs and experiences of autistic adolescents and young adults.
• Component B: Focus on Advancing Support and Transition with the Fragile X Online Registry With Accessible Research Database (FAST FORWARD) will employ clinic-based enrollment of eligible participants with FXS to collect data on diagnosis, service and support needs, and educational, transitional, social, and/or vocational needs and experiences of people with FXS and their families.
• Component C: Disseminate quality public health products to 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 support patients with FXS on a national level.