January 19, 2010 IACC Meeting Summary

The Interagency Autism Coordinating Committee (IACC) met on Tuesday, January 19, at the National Institutes of Health, in Bethesda, Md.

The morning session included a presentation by Autism Speaks vice president for scientific affairs, Andy Shih, Ph.D., on global efforts on autism research and service delivery. During his talk, Dr. Shih updated the IACC on a wide range of international efforts and collaborations that are exploring causes

Andy Shih

Andy Shih at IACC meeting

and treatments for autism spectrum disorders. Dr. Shih emphasized the importance of international research for understanding environmental and genetic risk factors, by comparing autism prevalence estimates in different countries, and for investigating community based interventions that are scalable and exportable in regions with lower levels of resources. Dr. Shih detailed Autism Speaks Global Autism Public Health (GAPH) Initiative which focuses on collaborative international efforts to help deliver answers to individuals and families affected by autism. Forming strategic partnerships among countries with different cultures, levels of expertise, and existing service infrastructure is critical for success. In addition to direct benefits to individual countries and territories, lessons learned from these partnerships will help the entire global autism community.

The IACC also continued its practice of hosting briefings on the latest scientific technologies relevant to autism. Andrew Feinberg, M.D., M.P.H. of Johns Hopkins University School of Medicine Institute of Genetic Medicine presented on epigenetics and autism. Epigenetics, a relatively new field of inquiry, refers to changes in gene expression caused by mechanisms other than changes in the underlying DNA sequence. Dr. Feinberg's research has demonstrated that epigenetic changes help explain susceptibility to certain cancers and suggest new avenues for treatment. Dr. Feinberg's team is now developing tools for genome-wide scanning and epigenetic analysis, applicable to disease generally. These tools are being applied to common disorders, including bipolar disorder, schizophrenia and autism. Dr. Feinberg is a member of the Autism Speaks Scientific Advisory Board which reviews grant applications for scientific merit.

Catherine Rice, Ph.D., CDC National Center on Birth Defects and Developmental Disabilities, provided a summary of the CDC prevalence data released in December 2009. The prevalence data showed that about 1 in 110 children are affected by autism spectrum disorders (ASD) in the U.S. The study is a product of the Autism and Developmental Disabilities Monitoring Network (ADDM). Data is based on health and education records from 11 ADDM sites in 2006, which includes eight percent of the U.S. population of 8-year-olds. Dr. Rice noted the significant increase in prevalence in ASD during a four year period, emphasizing that broader diagnosis is unlikely to entirely explain the increase. Thus, she indicated that continued research on environmental and other factors is needed. In addition, Dr. Rice noted that, despite the fact that ASD can be diagnosed by two years of age, this study showed that the average age of diagnosis in the U.S. still remains at about four and a half years of age. Dr. Rice is also a member of the Autism Speaks Scientific Advisory Board.

National Institute of Environmental Health Sciences (NIEHS) Director Linda Birnbaum, Ph.D. updated the IACC on their autism initiatives to conclude the morning session. NIEHS spent approximately $9.3 million in autism research for FY2009. Its areas of research include the Early Autism Risk Longitudinal Investigation (EARLI) which is a 10-year longitudinal study to investigate early risk associations, including pre-natal environmental exposures. The study is a public-private partnership led by Drexel University Principal Investigator Craig Newschaffer, Ph.D., and supported by the NIH Autism Centers of Excellence (ACE) program, NIMH, NICHD, NINDS and Autism Speaks. Dr. Birnbaum also reported that NIEHS-funded investigators at UC Davis are conducting a study of more than 1,000 children that will address the role of genetics and environmental exposures in the development of autism. Finally, Dr. Birnbaum described several new studies on environmental risk factors in ASD that were funded as part of the ARRA funding this past year.

The afternoon session was devoted to completion of the Strategic Plan for Autism Research which is required to be updated annually by the Combating Autism Act. The IACC voted unanimously to approve the Strategic Plan which had been updated by the committee over the past several months.

The IACC also held discussions and votes on how it will proceed with updating the Strategic Plan for 2011. It was determined that the NIH must commence a 2009 portfolio analysis of private and public funders of autism research earlier this year to assist in identifying gaps for the next update of the Strategic Plan. The Strategic Planning Subcommittee will once again be tasked with recommendations to the IACC for how to update the plan. In addition, the group discussed a plan for identifying the major scientific advances in autism research of 2009 and explored new ways of productively using the IACC to guide future autism research at NIH. Tom Insel, M.D., Chair of the IACC and director of the National Institute of Mental Health, indicated that they anticipate a adding number of new members by the April 2010 meeting. Finally, the committee reflected on ways to better incorporate public comment into their meeting deliberations.

The next IACC meeting will be April 30, 2010.