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...

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.