IAN RESEARCH CONFERENCE 2007
IAN: A Fast New Vehicle for Autism Research
On June 19, 2007, autism researchers from a wide variety of disciplines, as well as parents and advocates, gathered in Baltimore, Maryland for the Second Annual Interactive Autism Network (IAN) Research Conference. The overall goal of the meeting was to demonstrate to the scientific community how IAN can help them in their crucial work, and to request their support and involvement. (Quick Link to IAN Resources for Researchers and for Families.)
Who was there? Read our List of IAN Research Conference Attendees (pdf - 33.3 KB).
Last year, at the very first IAN Research Conference, attendees heard about our dream of creating an online network that would permit families to share their knowledge and experience with researchers exploring crucial questions in autism. This was still during the "idea" stage, when exciting plans were taking shape but concrete results were yet to be achieved.
This year, two and a half months after the IAN Project's official launch, the IAN team had major progress to report. IAN Research and IAN Community were online and active, 15,000 individuals had consented to take part in the research project, we had published our first IAN Research Report based on families' data, and over 1.5 million pages of content had been viewed on the IAN Community.
Click here for the Conference Agenda (pdf - 21 KB). The theme was racing --to symbolize that IAN was all about making autism research go FASTER!
The "Auto Show"
The morning was devoted to "the Auto Show" --an introduction to IAN. Kiely Law, IAN's Director of Research, presented on IAN Research. Connie Anderson, IAN's Online Community Facilitator, reported on IAN Community. Cheryl Cohen, the Director of IAN Community, introduced attendees to the upcoming researcher-to-researcher Scientific Community of Practice called IAN Exchange. Lastly, Dawn Koplos, a member of IAN's Parent Advisory Committee and Director of Pathfinders for Autism, gave a report on IAN from a parent's perspective.
You can view the presenters' PowerPoints here!
(The slides are in Microsoft PowerPoint. If you do not have PowerPoint, you can view the slides using PowerPoint Viewer -which you can download for free here.)
- IAN Research
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- IAN Community
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- IAN Exchange - Scientific Community of Practice
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- IAN from a Parent's Perspective
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Researchers wanted to find out how IAN could help them with their varied projects, and there were several vigorous question and answer sessions. The Director of the IAN Project, Dr. Paul Law, gave a demonstration of IAN for researchers, explaining that a wealth of data is already available, and that thousands of IAN participants stand ready to take part in additional autism studies. Researchers seeking research participants described their autism projects and the profile of individuals they needed in order to complete them. Dr. Law used a Google map to zero right in on their geographic area and show them how many IAN participants fitting their criteria were in their local area.
You can view Dr. Law's PowerPoint here, complete with Google maps:
- IAN Test Drive
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Note: The first slide in this presentation was drawn by Isaac Law, Paul and Kiely Law's 14 year old son, who is "on the spectrum."
It was clear that IAN has great potential to help many researchers find the subjects they need to go forward with their studies --something that has been a problem for many of them. There was also much enthusiasm on the part of researchers who wish to make use of the tremendous store of IAN data.
Dr. Janet Farmer, Director of the Thompson Center for Autism and Neurodevelopmental Disorders at the University of Missouri-Columbia, told attendees about the State of Missouri's partnership with IAN. This joint program, which involves an additional IAN questionnaire for Missouri residents, integrates IAN data with a state registry, sparing Missouri from developing an autism registry on its own. Other states hope to follow Missouri's example, piggybacking on IAN to find out how many children with autism are in their state, what services they are receiving, and how they are doing in the hopes of providing better services.
"IAN on Your Home Track"
Researchers and parents alike spent the afternoon brainstorming on how to expand and improve IAN. Groups gathered around "topic tables" to share their ideas on a variety of subjects, several of which were generated by parents who have called or e-mailed the IAN Project, or have posted on the IAN Community Discussion Forums. The topics discussed were:
- Including Adults - What should the "adult with ASD" version of IAN look like?
- IAN and the Environment - What environmental investigations could be pursued using IAN? What specific exposures should be addressed, and for whom? (Child, mother during pregnancy, father and mother occupational exposures, etc.)
- Pregnancy History - Developing a more detailed pregnancy and birth IAN questionnaire.
- Treatments/Interventions - Improving and expanding our current method of learning about treatments from families.
- Maternal Depression - 46% of mothers of children with ASDs in IAN Research report having been diagnosed with or treated for Depression. There is a need to further explore this statistic and its impact on families.
- Institutional Registry Integration - Working to integrate IAN with other systems, such as state-based autism programs or clinics where families receive care.
- IAN Sampling Issues - How to reach those without access to the internet, including minority populations.
- Co-Morbid Diagnoses - How should IAN collect data on co-morbid conditions, from Fragile X to ADHD or Depression?
"Researchers, Start Your Engines!"
As the day drew to a close, researchers were asked to offer their thoughts about how to make IAN more useful for scientists in their field, as well as a better tool overall. The IAN team took note of a variety of inspiring ideas, thanking the researchers for their interest in IAN and inviting them to begin making use of this valuable new tool. "Ladies and gentlemen," said our facilitator, "start your engines!"
It is our hope that researchers departed the conference revved up and ready to use IAN to accelerate towards new discoveries in autism research.
The IAN team would like to thank all of those who attended the IAN Research Conference, giving of their knowledge, experience, and ideas: researchers, parents, and representatives of Autism Speaks and the Kennedy Krieger Institute.
Researchers wishing to use the IAN data, or contribute in other important ways, can use the following resources:
- How to Apply to Use the IAN Data
- How to Apply to Recruit Research Participants Through IAN
- Writing for the IAN Community - Instructions for Authors
- How To Spread the Word About IAN - The more families join the IAN project, the more data and potential research recruits there will be, so please help us tell families about IAN.
- Sharing Ideas - We Value Your Input! To suggest additional IAN data collection questionnaires, to offer suggestions, or to ask questions, please write us at email@example.com.
- Families who wish to learn more about participating in IAN Research can learn more here.
- Families who are ready to participate in IAN Research can register here.
- Curious about what questions IAN is currently asking families? Take a look at the IAN questionnaires.
- We have some preliminary results! Read the first ever IAN Research Report.