The Autism Intervention Research Network on Physical Health has launched a new website for families raising children with ASD. Please click here for more information.
Project Title: Autism Intervention Research Network on Physical Health
Project Director and Contact Person: James M. Perrin, MD
Telephone: (617) 726-1885
Site: Massachusetts General Hospital, 50 Staniford Street, #901, Boston, MA 02114
Project Period: September 2008 – August 2011
Keywords: autism; treatment; care coordination; practice guidelines; training
Families of children with ASD face difficulty accessing adequate healthcare. Barriers include the lack of medical guidelines and of providers with the training to identify medical conditions. The AIR-P will build the evidence-base, develop guidelines of medical care and disseminate findings.
Goals and Objectives:
Goal 1: To conduct research on consensus- and evidence-based practices
Objective 1: To implement a collaborative mechanism to develop innovative research concepts and protocols that will help improve care for children with ASD (year 1)
Objective 2: To develop 3 concept proposals per year; to submit one proposal for external funder per year; to acquire funding for at least 2 research projects
Objective 3: To conduct and develop at least two intervention-focused research projects in areas of sleep, GI, nutritional or neurologic disorders in children with ASD (years 1-3)
Goal 2: To develop, test, and implement consensus-based guidelines of medical care for children with ASD
Objective 1: To develop and refine two consensus guidelines per year
Objective 2: To implement and test two consensus guidelines per year
Goal 3: To disseminate research findings and guidelines to providers, parents and other relevant audiences
Objective 1: To conduct one leadership conference per year targeted toward the parent community
Objective 2: To provide a website with ongoing updates targeted to families and providers; to distribute a quarterly newsletter
Objective 3: To publish at least 2 manuscripts in a peer reviewed publication over the 3 year period; to present findings and guidelines at conferences targeting primary care providers and relevant subspecialty providers (1 in year 1; 2 in year 3; 2 in year 3)
Goal 1 - The AIR-P will convene a Scientific Review Committee with CRE and coordinating center as well as external representation to review all proposals and concepts. AIR-P subspeciality subcommittees are tasked with developing research concept ideas for review by this committee. The AIR-P steering committee will be responsible for the formal approval of proposals for both internal and external funding. Once approved, the sleep and nutrition projects briefly described in the AIR-P proposal will be implemented. Goal 2 - Each subcommittee has drafted at least one consensus-based guideline with previous Autism Speaks funding. During year 1, NICHQ and the NCC will provide leadership in refining, testing and implementation of these guidelines within the ATN sites. In addition, subcommittees will continue to develop additional consensus guidelines for testing and implementation. Goal 3 - Guidelines and research findings will be disseminated to relevant providers and family members by NICHQ, the NCC, and AS through peer reviewed publications, presentations at conferences targeting providers and families, newsletters, and the AIR-P and ATN websites.
The NCC (MGH) provides overall leadership for the AIR-P including development of consensus-based guidelines, generation of and implementation of research ideas, and dissemination. AS coordinates and supports dissemination. NICHQ will provide support in development and evaluation of guidelines and toolkits to aid in implementation. EMMES manages data collection and quality assurance of the AIR-P research projects (both externally and HRSA funded) and the ATN Registry (through ATN funding)..
Success of goal 1 will be measured by the number of research concepts and protocols developed into full proposals and number of studies successfully funded. Once funded, success of research projects will be measured by meeting enrollment goals and at least 1 peer-reviewed publication per project.
Experience to Date:
1. Drafted 5 consensus-based guidelines in algorithm format (diarrhea, constipation, insomnia, EEG, MRI). 2, Developed a plan for implementation of 2 algorithms (constipation and insomnia). 3. Modified ATN Registry forms to enhance collection of valuable data in a more user-friendly format. 4. Development of a Parent-Based Sleep Education Program for Children with Autism Spectrum Disorder” project developed and reviewed by SRC. Project is currently in start up stages. 5. Diet and Nutrition in Children with Autism Spectrum Disorders: An Autism Treatment Network Collaborative Stud.” Reviewed by Scientific Review Committee. Currently under revision with target start date of June 2009. 6. Formal RFA drafted for release in June 2009 to stimulate research interests across the network. 7. Held investigators meeting to discuss start up of sleep and nutrition projects. 8. Convened Scientific Review Committee two times to review nutrition and sleep projects. 9. Held a meeting (with ATN funding) in December 2008 to refine guidelines 10. Convened AIR-P Steering Committee for first quarterly call in January. 11. Developed content, planned layout for Family Services module of website scheduled for release in May 2009. 12. Completed 3 presentations at local seminars to provide families and providers background and updates on the AIR-P. 13. Established formal arrangements with all subcontractors.