Posted by Ryan Butler, collaborations manager for Autism Speaks Autism Genetic Resource Exchange
Over the past three years, Autism Speaks and the National Institutes for Environmental Health Sciences have sponsored the Environmental Epidemiology of Autism Research Network (EEARN). The network’s goal is to improve communication among researchers, identify opportunities for collaboration and improve research tools. The group has met for the past three years at the International Meeting for Autism Research (IMFAR).
I have attended each year to represent Autism Speaks’ gene repository, the Autism Genetic Resource Exchange (AGRE). Over the years, I have watched the network grow in membership and effectiveness. In 2010, the group focused on collaboration and consolidation of efforts in the field. Last year, we focused on specific projects for group collaboration.
This year’s meeting began with updates on two such projects funded by Autism Speaks. Cheryl Walker and Rebecca Schmidt (University of California, Davis) discussed progress on their exposure assessment questionnaire. Their goal is to develop standardized environmental exposure questionnaires that can provide consistent information across studies on potential environmental risk factors for autism. Walker and Schmidt have already drafted several portions of this questionnaire and distributed them for review. They will be used to collect exposure data from the Baby Siblings Research Consortium.
The second Autism Speaks funded study is examining exposure to air pollutants during pregnancy. It is looking for associations between these exposures and the development of autism. The grant was awarded to Heather Volk, from the University of Southern California. Volk is using the AGRE Online System for Clinical Research to contact AGRE families and ask them to complete a short questionnaire. More than 200 families have participated to date. Her team will compare their information with previously collected pollutant data to study the risks of exposure and gene-environment interactions.
The remainder of the meeting focused on a variety of questions. How can we improve epidemiology studies? What is the best way to structure epigenetic (gene-environment interaction) studies to yield the most relevant results?
One of the more interesting discussions focused on the responsibility of researchers and funding organizations to communicate research findings to the public. We agreed that the findings of small studies and preliminary results need to be reported carefully. Often these findings are exciting and merit further research. However, they are aptly labeled “preliminary.” We agreed it is extremely important to make sure that the public understands this distinction. This is particularly important when an interesting finding is reported by the press before it’s peer-reviewed and published. This is a very tricky issue that requires input from experts in communication, ethics and the media.
I look forward to helping with the efforts of EEARN in the coming year. We will keep you updated!
Editor’s note: Thanks to your support, Autism Speaks is funding a number of studies on environmental exposures. You can explore these and other donor-supported research programs using our Grant Search engine.