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Resource Finder at Kennedy Krieger Institute
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Research Discussion with Interactive Autism Network (IAN) Director Dr. Paul Law
April 2012 marks the fifth anniversary of the IAN Project -- www.ianproject.org -- which has connected tens of thousands of individuals on the autism spectrum and their families with researchers nationwide to accelerate the pace of autism research. With more than 42,000 participants, this innovative online project, housed at the Kennedy Krieger Institute in Baltimore, Md., has the largest pool of autism data in the world.
In the following question and answer session, Dr. Paul Law, director of the IAN Project, discusses IAN's impact on autism research over the past five years, and what he hopes to accomplish during the next five years and beyond. For more information on the IAN Project or to get involved, visit www.ianproject.org.
At IAN's launch, the goal was to "drive autism research forward more quickly and efficiently." How has this been accomplished over the past five years?
We're very pleased with IAN's progress over the past five years; its impact is felt across the field of autism research, touching research, policies and, most importantly, individual members of the autism community.
- Research: The IAN Project has connected families with 400 research studies, and moved all those research projects along much faster, some of which never would have been conducted without access to the IAN families. We also changed the way that genetic research is conducted by introducing rapid phenotyping -- an approach where families quickly enroll in studies for which they're eligible -- allowing researchers to efficiently collect needed information and then move straight on to genetic data collection. Previously, families could spend several days in the clinic prior to the collection of blood samples.
- Policy: Data collected in partnership with IAN families has contributed to the biggest issue of autism today: the restructuring of DSM 5. The DSM committee used three IAN studies to inform the DSM 5 revisions.
- Community: We realize that a project involving more than 42,000 people could be impersonal. However, the community liaisons we have on staff, such as Connie Anderson, possess the amazing ability to present our research findings through compelling, easy-to-understand articles and reports. Other major players in the autism arena have turned to IAN for advice on how to engage families, specifically in research.
Autism researchers around the world have utilized IAN participants and/or IAN-gathered data in conducting their own studies. What are some of the more notable projects that have utilized IAN in this way, and how have they advanced the field?
We are thrilled with the hundreds of studies that have utilized IAN data and worked with IAN families. Some of the notable projects include:
- In the largest-of-its-kind study, John Constantino, director of the William Greenleaf Division of Child & Adolescent Psychiatry at Washington University in St. Louis, used IAN data to examine siblings of children with autism, finding that these siblings have a higher than expected rate of language delay, sometimes with features of ASD. He was also able to show evidence that girls with ASD are under-diagnosed.
- One of the notable studies published in the Journal of Autism and Developmental Disorders by our IAN team examined the stability of ASD and trends of diagnoses of ASD across the United States over time, looking at how certain diagnoses come in and out of favor.
- IAN treatment data was used to explore the use of psychotropic medication by children with ASD. Overall, researchers found that 35 percent of the 5,181 children studies used at least one psychotropic medication (that is, psychiatric medication like those used to treat ADHD, anxiety, depression, and meltdowns).
- IAN is also playing a crucial role in supporting the growth and success of the Simons Simplex Collection, one of the largest collections of genetic data from thousands of families. The research now spans several categories and publications resulting from the collection are broader than the original topic of genetics. An ongoing and unique partnership between IAN and the Simons Foundation, the Simons Simplex Community at IAN (SSC@IAN), is one of the largest-ever autism research enterprises. IAN helps the Simons Foundation maintain long-term relationships with the families by providing an online home that fosters recruitment, ongoing data collection, and the nurturing of relationships with participating families.
Are there specific IAN Research Reports that have had a significant, tangible impact? If so, how?
Absolutely; while all of our reports provide valuable insights that often drive additional research, a few do stand out:
- IAN's survey on elopement (escaping) and wandering (IAN Research Report: Elopement and Wandering) was an amazing opportunity to respond to the Interagency Autism Coordinating Committee's call for information on the leading cause of death among people with ASD (the tendency of individuals with ASD to wander or "bolt" puts them at risk of trauma, injury and death). By collaborating with a diverse group of parent organizations to design and coordinate this first-of-its-kind survey, we opened up an entirely new field of much-needed research. Additionally, our series of treatment research reports generated a fair amount of interest, and through our continued research, we determined that individuals with ASD are using more than 400 different treatments.
- Following the launch of IAN, it became clear that grandparents -- a population largely overlooked by policymakers and researchers -- had valuable insights to share. Grandparents of children with ASD approached us to ask how they could participate in the IAN Project. Our 2009 Grandparents of Children with Autism Spectrum Disorders Survey demonstrated the substantial impact having a grandchild on the autism spectrum has on grandparents' lives. It highlighted the contributions grandparents make with child care, financial support and early detection, which is crucial to early diagnosis and intervention.
Has any of the data you've collected over the past five years taken you by surprise?
The day we launched IAN in 2007, we were inundated with questions about mothers of children with ASD and depression. On that very first day, it was clear that one of the first surveys we would need to do would be the mothers and depression survey, which when completed revealed valuable insights that have continued to drive research on the topic.
How has IAN served as a model for other disease states that have developed similar online databases?
I've spoken at a variety of conferences and with representatives from at least 30 groups representing a diverse range of disease communities, from Down syndrome to chromosome disorders to AIDS. During my presentations and in subsequent conversations, I have discussed all aspects of IAN, and I'm seeing many groups go on to launch similar initiatives, though often on a somewhat smaller scale. Currently, we're in the process of submitting a grant for the development of a disability research community, akin to IAN but not limited to autism, within the military population.
What are the most utilized features of IAN? Are there any features you hope to improve?
As a result of requests from researchers, we are enhancing IAN’s subject recruitment for other studies. We will be adding the ability to make this system much more interactive, whereby researchers can collect information from families during the recruitment process to confirm eligibility and complete baseline online forms.
Is there any anecdotal feedback from parents, researchers or policymakers who have used IAN that speaks to the impact IAN has had on the autism community?
Stuart Spielman, policy analyst at Autism Speaks, has kindly praised IAN's utility for advocacy, noting that we've helped him and his team change insurance coverage laws in more than 20 states. Also, our State Stats feature, which provides state-by-state autism statistics, is routinely used by the Missouri Autism Commission and results are presented to the governor on a regular basis in order to monitor their state-specific goals. Other states use these statistics as well.
In many individual cases, we provide information that really matters to parents; people email us, post on the forum with an urgent question or call, and we point them to the wonderful resources and information that is available on the site. They often write back astounded that we responded to them so fast, and with such useful information. While IAN has achieved many "big picture" milestones, on a very small yet just as important scale -- that of the individual family -- we have also done a lot that will never be measured or recorded. We don't just create these materials and resources; we also help point parents and others towards the resources that they need during a particular crisis or issue.
What are your goals for the next five years? Are they different from your initial goals?
Our overall mission remains the same: accelerate the pace of autism research to lead to improvements in the lives of those with ASD. We are expanding to do more with adults, working to transition current IAN families into adulthood. We want to capture different types of data with adults in order to affect national policy, a well-recognized weakness across the country.
IAN recently opened to international families of individuals with autism, and we also have several initiatives to engage more fathers; lack of fathers' involvement is a challenge throughout autism research.
One of our most exciting research developments is that IAN is now hosting an online, randomized, controlled clinical trial. This type of trial can be done online if methods used are deemed safe, and outcome measures can be collected online. Another evolving opportunity is that we're becoming more intimately involved with the research processes of other projects, tracking families that come out of specific projects and maintaining the relationships with these families so projects continue to move forward.