MCHB HCT-RN for Youth and Young Adults with ASD Research Network Grant

The purpose of this cooperative agreement is to support the creation of an interdisciplinary,

multi-center research forum for scientific collaboration and infrastructure-building, with a focus on research designed to improve health care transitions and promote an optimal transition to adulthood among youth and young adults with ASD, including optimal physical, psychosocial, educational, and vocational outcomes.  The Network should include both adolescent and adult researchers across a range of disciplines reflecting attention to the health and development of the whole person.

The HCT-RN will address the critical lack of research on life course influences at the person, family, community, health system, and policy levels prior to, during, and following the transition of youth and young adults with ASD from pediatric to adult care settings.  As part of HRSA¿s Combating Autism Act Initiative (CAAI), the HCT-RN contributes to a collaborative effort to address autism and related developmental disabilities through education and intervention.  The work of this Network will complement the ongoing research and evaluation activities occurring both within the CAAI and in the research field broadly, and will have the following goals:

Develop a national research agenda designed to improve health care transitions and promote an optimal transition to adulthood among youth and young adults with ASD, including healthy physical, social, and vocational outcomes, through research that focuses on:
Identifying factors that predict successful transition, and those factors within transition that affect outcomes;
Understanding and identifying the components of successful transitions across a range of autism spectrum populations, including populations that remain underdiagnosed with regard to ASD, such as certain racial/ethnic minorities, and girls and young women;
Examining the effectiveness of existing transition models and programs to see which ones work best and for whom;
Addressing the need for evidence-based approaches to support transition to adulthood and employment, including social skills interventions;
Addressing the critical lack of tested interventions for adolescents and young adults either to address the core symptoms of ASD (social impairments, communication, and repetitive behaviors) or to improve adaptive behaviors that increase the potential for independence;
Comparing models at the systems level, taking into account the clear and still-emerging scientific findings regarding interactions among biological, social, and community processes, and the resulting need for integrating systems of services across physical and behavioral health domains.
Identify cutting edge research priorities and use the national research agenda created by the Network to actively guide the Network¿s implementation of research studies through both MCHB and external funding sources;
Establish transition care guidelines and conduct quality improvement projects to improve transition care; 
Disseminate critical information and foster continued education activities on its research findings to inform researchers, professionals, policy makers, the public, and other stakeholders, including families with youth and young adults with ASD; and
Improve the nation¿s capacity to conduct research on health care transitions among youth and young adults with ASD by: building relevant data infrastructure; improving analytic methods, including the need to develop new measures that focus on valued outcomes such as improvement in quality of life; examining the use of technology in transition; and fostering research and mentorship opportunities for new investigators through active communication, networking, and collaboration.

      The Network will use the national research agenda that it creates to:
Actively guide the Network¿s implementation of priority research studies through both MCHB and external funding sources;
Advance the methods of studying the implementation and effectiveness of services that promote optimal transitions to adulthood for youth and young adults with ASD;
Develop and/or contribute to approaches to data sharing that will expedite the translation of research results into knowledge, products, and procedures, and improve the standardization of data collection tools and transition care guidelines; 
Develop quality measures to help monitor progress in improving care and outcomes for people with ASD;
Contribute to the development of models of integrated care across traditionally disparate systems, including physical and behavioral health care;
Improve the delivery of health care transition services for youth and young adults with ASD from a diverse range of backgrounds, including ethnic/racial, cultural, linguistic, soecioeconomic, and geographic (e.g., rural/urban); and
Improve access to services and address health disparities among underserved populations, including girls and young women, who remain an underdiagnosed population with regard to ASD.

HRSA, as the home of the Federal Office of Rural Health Policy, is interested in analyses of rural-urban differences, where data allow. 

Consistent with HRSA¿s mission as the access agency to provide services to underserved populations, applicants for the HCT-RN should describe network activities that will address the needs of underserved populations, such as low-income, racial/ethnic minorities, individuals who otherwise have limited access to services, and/or other underserved populations as defined by the applicant. 

The Maternal and Child Health Bureau¿s intent is to ensure that research activities are responsive to the cultural and linguistic needs of special populations, that services are family-centered and accessible to consumers, and that the broadest possible representation of culturally distinct and historically underrepresented groups is supported through programs and projects sponsored by the MCHB.