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Autism Intervention Research Network on Physical Health (AIR-P Network)

Grantee: University of California, Los Angeles
Principal Investigator: Alice Kuo
Project Number: UT2MC39440
Project Date: 09/01/2020

Project Website

Age group(s)

  • Early Childhood (3-5 years)
  • Middle Childhood (6-11 years)
  • Adolescence (12-18 years)
  • Young Adulthood (19-25 years)

Targeted/Underserved Population

  • Low-income
  • Special Health Care Needs

Abstract

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 POPULATION(S): 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.

Publications

Listed is descending order by year published.

Carey ME, Tao S, Koffer Miller KH, et al. Association Between Medicaid Waivers and Medicaid Disenrollment Among Autistic Adolescents During the Transition to Adulthood. JAMA Netw Open. 2023;6(3):e232768. doi:10.1001/jamanetworkopen.2023.2768

Hotez E, Haley M, Martinez-Agosto J A, et al. (August 30, 2023) Updates to the Autism Intervention Research Network on Physical Health (AIR-P) Research Agenda. Cureus 15(8): e44388.

Hotez E, Rava J A, Shea L, et al. (June 28, 2023) Developing “Adulting for Health”: Investigating the Health Needs of Neurodivergent Emerging Adults . Cureus 15(6): e41102. doi:10.7759/cureus.41102

Natri H, Chapman C, Heraty S, Dwyer P, Walker N, Kapp S, Dron H, Martinez-Agosto J, Mikkola L & Doherty M. Ethical challenges in autism genomics. Recommendations for researchers. European Journal of Medical Genetics. Vol 66, Issue 9, 2023

Rast JE, Roux AM, Connor G, et al. The Medical Home and Mental Health Services in Children and Youth with Special Health Care Needs. Matern Child Health J. 2023;27(6):1097-1106. doi:10.1007/s10995-023-03652-1

Rast, J.E., Fernandes, S.J., Schott, W. et al. Disparities by Race and Ethnicity in Inpatient Hospitalizations Among Autistic Adults. J Autism Dev Disord (2023). Https://doi.org/10.1007/s10803-023-05911-0

Roux, A. M., Shea, L. L., Steinberg, H., Rast, J. E., Anderson, K. A., Hotez, E., Rosenau, K., Kuo, A., Assing-Murray, E., & Shattuck, P. T. (2023). Evidence from the Autism Transitions Research Project (2017–2022): Capstone review and services research recommendations. Autism Research, 16(3), 480–496. https://doi.org/10.1002/aur.2890

Schott W, Tao S, Shea L. Prevalence of high-risk conditions for severe COVID-19 among Medicaid-enrolled children with autism and mental health diagnoses in the United States [published online ahead of print, 2023 Feb 17]. Autism. 2023;13623613231155265. doi:10.1177/13623613231155265

Brown HM, Dwyer PSR, Gassner DL, et al. The Autism Intervention Research Network on Physical Health Autistic Researcher Review Board. Pediatrics. 2022;149(Suppl 4):e2020049437F. doi:10.1542/peds.2020-049437F

Dwyer P, Ryan JG, Williams ZJ, Gassner DL. First Do No Harm: Suggestions Regarding Respectful Autism Language. Pediatrics. 2022;149(Suppl 4):e2020049437N. Doi:10.1542/peds.2020-049437N

Fernandes P, Kwak H. Autism and COVID-19. Pediatrics. 2022;149(Suppl 4):e2020049437O. doi:10.1542/peds.2020-049437O

Fernandes P, Timmerman J, Hotez E, et al. A residency program curriculum to improve health care transitions for autistic individuals. Pediatrics. 2022;149(Supplement 4). doi:10.1542/peds.2020-049437u

Gragnani CM, Fernandes P. Promoting Healthy Lifestyles and Well-Being in Autistic Youth. Pediatrics. 2022;149(Suppl 4):e2020049437H. Doi:10.1542/peds.2020-049437H

Graham Holmes L, Ames JL, Massolo ML, Nunez DM, Croen LA. Improving the Sexual and Reproductive Health and Health Care of Autistic People. Pediatrics. 2022;149(Suppl 4):e2020049437J. Doi:10.1542/peds.2020-049437J

Graham Holmes L, Rast JE, Roux AM, Rothman EF. Reproductive Health and substance use education for autistic youth. Pediatrics. 2022;149(Supplement 4). doi:10.1542/peds.2020-049437t

Kuo AA, Hotez E, Rosenau KA, et al. The Autism Intervention Research Network on Physical Health (AIR-P) Charter. Pediatrics. 2022;149(Suppl 4):e2020049437C. Doi:10.1542/peds.2020-049437C

Kuo AA, Hotez E, Rosenau KA, et al. The Autism Intervention Research Network on physical health (AIR-P) research agenda. Pediatrics. 2022;149(Supplement 4). doi:10.1542/peds.2020-049437d

Kuo AA, Torrest A. Meeting the primary care needs of autistic individuals. Pediatrics. 2022;149(Supplement 4). doi:10.1542/peds.2020-049437g

Kuo AA. Promoting lifespan health and well-being through the Autism Intervention Research Network. Pediatrics. 2022;149(Supplement 4). doi:10.1542/peds.2020-049437b

Morgan EH, Rodgers R, Tschida J. Addressing the Intersectionality of Race and Disability to Improve Autism Care. Pediatrics. 2022;149(Suppl 4):e2020049437M. Doi:10.1542/peds.2020-049437M

Rast JE, Roux AM, Fernandes SJ, D'Silva V, Shea LL. Hospital Inpatient Stays for Autistic Youth and Youth With Other Disabilities. Pediatrics. 2022;149(Suppl 4):e2020049437R. Doi:10.1542/peds.2020-049437R

Rosenau KA, Hotez E. Promoting Interdisciplinary and Participatory Autism Research. Pediatrics. 2022;149(Suppl 4):e2020049437P. doi:10.1542/peds.2020-049437P

Roux AM, Rast JE, Shea LL. Family Perceptions of Health Care Access for Autistic Young Adults Receiving Disability Services. Pediatrics. 2022;149(Suppl 4):e2020049437S. Doi:10.1542/peds.2020-049437S

Schott W, Tao S, Shea L. Emergency Visits for Autistic Children and Children With ADHD. Pediatrics. 2022;149(Suppl 4):e2020049437V. Doi:10.1542/peds.2020-049437V

Shafqat I, Rosenau KA, Martinez-Agosto JA. The Role of Genetic Testing Among Autistic Individuals. Pediatrics. 2022;149(Suppl 4):e2020049437L. Doi:10.1542/peds.2020-049437L

Shattuck P, Shea L. Improving care and service delivery for autistic youths transitioning to adulthood. Pediatrics. 2022;149(Supplement 4). doi:10.1542/peds.2020-049437i

Waisman TC, Alba LA, Green SA. Barriers to Inclusive Learning for Autistic Individuals. Pediatrics. 2022;149(Suppl 4):e2020049437Q. Doi:10.1542/peds.2020-049437Q

Wilson RB. Improving Awareness, Identification, and Treatment of Motor Impairments in Autism. Pediatrics. 2022;149(Suppl 4):e2020049437K. Doi:10.1542/peds.2020-049437K


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