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AIR-P Network Steering Committee Meeting: A Chance to Review, Reflect and Move Forward

June 24, 2009

On May 28-29, 2009, the Autism Treatment Network (ATN) held the first in-person meeting of the AIR-P Steering Committee, whose role is to guide and oversee the research and guideline development activities specific to

the ATN function as the Autism Intervention Research Network on Physical Health (AIR-P), an initiative of the Combating Autism Act.

The AIR-P is a collaborative research network, funded through a $12 million, three-year grant to the Massachusetts General Hospital from the Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration (HRSA), an agency of the U.S. Department of Health and Human Services. Built on the ongoing structure of the ATN, the AIR-P focus is on research and the development over time of clinical guidelines for screening and treating physical health concerns common to children with autism.

Steering Committee members include James M. Perrin, M.D., Principal Investigator for the AIR-P initiative and director of the ATN Clinical Coordinating Center at the MassGeneral Hospital for Children (MGHfC); Daniel L. Coury, M.D. ATN Medical Director; the Principal Investigators leading the AIR-P research projects; site directors from each of the ATN sites; and representatives from the ATN Clinical Coordinating Center, Data Coordinating Center, Autism Speaks, HRSA/MCHB and the National Initiative for Children's Healthcare Quality (NICHQ), who will be helping to ensure the development and implementation of the guidelines.

The meeting, which took place in Arlington, Virginia, included Steering Committee members, designated physicians (known as Lead Autism Specialists) from the ATN sites, ATN clinic coordinators and the lead researchers in the AIR-P's current areas of focus: Nutrition, Sleep Disorders and Gastrointestinal (GI) Disorders.

AIR-P Steering Committee members and clinicians review, discuss progress and reach consensus on the direction of future activities.

The chief goal of the meeting was to review progress and plan the next steps for the AIR-P research agenda and the clinical practice guidelines and algorithms. The algorithms are the key part of a guideline that summarizes, through a process flow diagram, the diagnostic procedures, treatment options and decisions a clinician should consider in addressing a medical issue.

Meeting participants reviewed two draft algorithms in the areas of Sleep (Insomnia) and Gastrointestinal Disorders (Constipation). Plans were discussed for progressing the algorithms through the pilot trial and revision stages necessary to evaluate and refine the draft algorithms and more detailed procedures into clinical practice guidelines suitable for implementation across the wider medical community.

With the guidance and assistance of NICHQ, who provides substantial expertise in the development, professional acceptance, and dissemination of evidence-based guidelines, the algorithms will first be tested through pilot trials, initially at two ATN medical centers for each algorithm. The Insomnia algorithm will be piloted at Kaiser Permanente Northern California and University of Missouri at Columbia. Cincinnati Children's Hospital Medical Center and University of Colorado at Denver will pilot the Constipation algorithm.

The algorithms will be revised based on feedback from the pilots and then tested more widely at other ATN sites. Data collected through the course of the trials will comprise the evidence base to support the clinical practice guidelines and their eventual acceptance by key medical associations and implementation by clinicians. Three more algorithms are currently under development and are drafts expected to be completed in August.

Dr. Coury noted, "I'm gratified that we had this opportunity to look at ways to help the sites enhance their respective ability to provide ongoing, family centered care to children and adolescents. This accords well with the ATN philosophy for each site to serve as a centralized and coordinated medical center treating the chronic healthcare needs associated with ASD and related conditions."

"The meeting was exciting in bringing together both ATN leaders and participants as well as colleagues from government to help guide the AIR-P developments. The group provided much insight to steer the next set of AIR-P research projects," Dr. Perrin added.