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

Project Number: UA3 MC 11054-01
Project Date: 9/1/2008
Grantee: Massachusetts General Hospital
Department/Center: Pediatrics/ Center for Child and Adolescent Health Policy

Final Report

Pending

Principal Investigator

James M. Perrin M.D.,
Professor of Pediatrics, Massachusetts General Hospital Pediatrics/ Center for Child and Adolescent Health Policy,
50 Staniford Street, #901
Boston, MA 02114
jperrin@partners.org

Abstract

Problem: Many children and adolescents with autism spectrum disorders (ASD) experience a constellation of associated medical conditions that are poorly understood. As a result, families face substantial difficulty accessing adequate healthcare. Major barriers include the lack of standard diagnostic and treatment procedures to guide medical care, and a scarcity of primary and specialty health care providers with the training and experience to identify medical conditions in this population. The Autism Treatment Network (ATN) was established in 2005 to provide the clinical evidence to improve care and outcomes for children and adolescents with ASD. This proposal builds upon the core strengths and capacity of the ATN, making it the ideal platform to advance the mission of the Maternal and Child Health Bureau (MCHB). Purpose: To assist the MCHB and interested parties in carrying out systematic development and dissemination of the evidence needed to improve the physical health of children with ASD. Goals and Objectives: Our initial objective is to implement two rigorous studies on nutrition and sleep, and then to enhance network capacity to stimulate innovative research on other health concerns for these children. We will use the evidence to develop guidelines and tools that will inform practitioners, and disseminate findings to the broader community of families and primary care physicians. Methodology: To meet these goals, we will conduct two research projects. Study 1 will describe the nutritional and dietary patterns of children with ASD, generating critical data for the development of a nutritional screener and interventions. Study 2 will focus on developing and evaluating a parent-based sleep education program. We will complement the evidence development with dissemination activities that will include training videos, website postings and presentations at key conferences and meetings. We will work closely with NICHQ in development of toolkits and implementation of practice change and work collaboratively with the MCHB on strategies for dissemination of the proposed interventions. The Network Steering Committee will provide advice and oversight to concept development for additional research. Coordination: The team comprises leaders in ASD advocacy and health policy, expert clinicians and researchers from diverse child health specialties, and an advisory group with expertise in the guidelines and evaluation. We will work closely with the LEND network, and key stakeholders, such as Autism Speaks and the American Academy of Pediatrics. Evaluation: Each research project has an evaluative component to measure the effectiveness of the interventions in primary care and community based practice settings. We will measure the efficacy of each project through the timely development of key issue briefs, web-based educational programs, newsletters, and publication of the evidence developed.

Publications

Pending

Keywords

autism; treatment; care coordination; practice guidelines; training