Autistic individuals have significantly lower average physical and mental health-related quality of life compared to other underserved and vulnerable groups. The proposed Research Network will support innovative life course intervention research that promotes optimal health and well-being of autistic individuals across the lifespan in seven key areas: health care services primary care/prevention well-being interventions health care transitions sexual health neurology and genetics.
Goals and objectives:
The proposed Research Network will establish and maintain an interdisciplinary multicenter research network for scientific collaboration and infrastructure to increase the life expectancy and quality of life for autistic individuals with a focus on underserved/vulnerable populations. Objectives include conducting ongoing needs assessments to identify the needs experiences and priorities of autistic individuals and their families and the current gaps in the research practice and policy spheres; designing a portfolio of multi-site intervention research studies translating research to policy and practice; implementing small grants funding to facilitate the research training and mentorship of diverse junior/new investigators in this field; and disseminating AIR-P findings. Proposed activities and target populations:
The Network will advance intervention studies focused on autistic individuals across the lifespan; develop a centralized data repository for research in this area; incubate a small grants program; and create a process for research from proposals to publication with AUCD's network of interdisciplinary centers advancing policy and practice for and with individuals with developmental and other disabilities their families and communities. Coordination:
The Research Network will consist of a Network Coordinating Center (NCC) based at UCLA as well as 15 Collaborating Research Entities/Sites (CREs) and seven Research Nodes with expertise in priority areas for autistic individuals. AUCD will serve a key role in managing the overall functioning of the Network and will serve as the data repository for the initiative. Research that will be supported within the Network will require review feedback and approval from a self-advocate and family review committee to ensure that all Network research directly benefits autistic individuals. Products:
The proposed Research Network will produce an Annual supplement in Pediatrics as well as peer-reviewed publications webinars and conference presentations. We will also organize two AIR-P research days in conjunction with the AUCD and CARES conferences each year. Our new website will be an interactive repository to showcase our deliverables. Evaluation:
We will use a combination of process and outcome measures to assess the Network and the effectiveness and efficiency in attaining all goals and objectives.
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