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Autism Intervention Research Network on Physical Health: Progress and Update

November 14, 2012

Website Link  http://www.autismspeaks.org/airp

The Autism Intervention Research Network on Physical Health (AIR-P), a collaboration of 14 academic health centers in the US and Canada, recently published a major supplement to the journal, Pediatrics, entitled "Improving Health Care for Children and Youth with Autism and Other Neurodevelopmental Disorders."  This supplement provides information on recent research carried out by the network, as well as guidelines and other guidance regarding sleep, gastrointestinal, and hyperactive-impulsive behaviors among children and adolescents with autism and related conditions.  Other papers reflect analyses of the network registry, now including over 5,000 children and adolescents.  Additional papers reflect the work of other projects supported by the CAAI in other institutions.  (Find the supplement at http://pediatrics.aappublications.org/content/130/Supplement_2.toc.)

We expect this supplement will help both families and clinicians to recognize the growing literature that provides clear guidance on how to provide better health care for children with neurodevelopmental disabilities.

The AIR-P is directed by James M. Perrin, MD, Harvard professor of pediatrics at the MassGeneral Hospital for Children in Boston.  Built on core funding from Autism Speaks to support its Autism Treatment Network (ATN), the AIR-P has also produced a number of professional and parent toolkits to improve health care for children with autism and related conditions.  A major activity of the AIR-P has been dissemination of these toolkits, guidelines, and other findings to parent and professional communities.  Autism Speaks sponsored its first parent-oriented national conference in August 2012 as one part of the effort to bring the findings of the network to larger audiences.  Network clinicians have been involved in many continuing medical education conferences and national research meetings to broaden the reach of the network.

With its renewal in 2011, the AIRP expanded the work of both its family advisory committee (FAC) and its steering committee.  The FAC works at both site and systemwide levels.  Members have taken major lead in network oversight and in review of network research and improvement projects.  The Steering Committee, led by Drs. Patty Manning (Cincinnati) and Lonnie Zwaigenbaum (Edmonton), has led efforts to strengthen understanding of the network clinical care model and to enhance its spread to other communities across North America.  Working closely with the National Initiative for Children's Healthcare Quality, the committee has guided the application of improvement methodology to the several efforts of the network to improve care for children with autism spectrum disorders.  The recent fall program meeting for the ATN and AIR-P focused on ensuring consistent application of the network care model, new efforts in initial triage, staff assignment, and follow up in centers, and ways to increase primary care involvement across the sites.

With support through the AIR-P funding, the network has now initiated over 16 clinical research projects across the sites.  Many of these have completed their data collection and are busy in preparing manuscripts for publication.  The recent Pediatrics supplement included initial results from some of these projects.  We expect a steady stream of publications from these research activities over the next year, as well as initiating additional projects.