"Your Research Ideas"
A Letter from our Chief Science Officer
1 May 2012
Setting priorities in autism research funding requires careful consideration. Even when we combine all funding sources, both private and public, the available funds do not begin to match the need to improve diagnosis, understand causes, create more effective treatments and services and deliver these programs across the lifespan.
We know we can do all these things with sufficient funding. But until the money catches up to the size, scope and urgency of need, how does Autism Speaks prioritize the precious research funds that our communities entrust to us?
Certainly we seek a broad range of input, including the advice of experts in many fields. But ultimately our obligation is to serve those with autism and their families. And so we wanted to hear directly from our community of families and supporters. We wanted to know how our stakeholders want Autism Speaks to prioritize its research support. From this desire, “MyResearchIdea” was born.
Today, it is my pleasure to report the results of this experiment, which involved many of you as participants. Between mid-January and mid-February, we invited you – our community of families and supporters – to tell us about the research priorities you hold dear. This wasn’t just a “feel good” exercise. We sincerely desire your input as we develop our strategic science plan for the next phase of autism research supported by Autism Speaks. And we are so grateful for your tremendous response to our solicitation of your ideas.
Close to 1,000 of you visited our MyResearchIdea website to submit your ideas and vote on the ideas submitted by others. In all, you submitted 180 research suggestions and cast more than 2,000 votes. As we hoped, you showed us how passionately you share our mission to improve the lives of all those who struggle with autism spectrum disorder (ASD). In poring over your ideas, we found that many of the most popular proposals overlapped. What emerged from this were clear categories of interest. I’ve summarized these with the graph above. (Note: The numbers reflect the net results of “thumbs up” and “thumbs down” votes for all ideas that generated at least 10 net positive votes.)
Let’s look at the ideas that received at least 100 votes from the community. As you can see, there was great interest in further exploring the role that immune dysfunction may play in the development or aggravation of autism symptoms. We hear you. Thanks to your support, we are already funding a number of such studies, and we promise to continue to invest in this important avenue of research. It is clear that this area of investigation needs to be among the high priorities for autism research. Such research needs to explore the role of immune dysfunction in the underlying biology of autism and its implication for therapeutic interventions.
You were also passionate about research into the environmental risk factors, or nongenetic influences, that can predispose an individual to autism. Here, too, your support has already helped produce important scientific insights. In the past year alone, scientists have reported on a number of possible environmental risk factors such as a woman’s folic acid levels at the time of conception, extremely low birth weight, and exposure to pesticides, pollutants and other possible stresses during crucial periods of prenatal and early postnatal brain development. While each of these risk factors confers only a slight increased risk of autism, together they begin to provide guidance on practical steps for reducing risk. Ongoing studies are casting a wide net in exploring a myriad of environmental risk factors that may influence brain development during the prenatal and early postnatal period.
Over the next three years, our inaugural Faith and Philip Geier Grant for Environmental Research will allow Daniele Fallin and her team at Johns Hopkins Bloomberg School of Public Health to study gene-environment interactions across the entire genome of children affected by ASD, with a focus on environmental influences during pregnancy, birth and early childhood. Here, too, you have our pledge to remain world leaders in guiding and advancing this important field of study. (Explore our current environmental research here.)
Your ideas also concurred with our commitment to balance long-term investment in scientific “breakthroughs” with studies that can improve lives today with better therapies and support services. In particular, you wanted more research into complementary and alternative approaches to treating autism symptoms and associated medical conditions such as GI distress. You also prioritized adult services research – especially the development and evaluation of effective programs for supporting the transition to independence and employment. We agree and are redoubling our efforts to support research on the development of services that can improve quality of life in adults with autism.
You also told us that you want us to conduct more research focused on developing more effective FDA-approved medicines for reducing autism’s core symptoms, including social communication impairments and repetitive behaviors, in both children and adults. More effective medicines are also needed to ameliorate associated symptoms such as sleep disorders and seizures, which are so disabling for many. We pledge to you that we will not only use Autism Speaks research funding for this purpose; we will continue to work with pharmaceutical companies to convince them to focus their resources on autism.
With this letter, I’m only touching on the biggest “wedges” of the MyResearchIdea pie. We received many other insightful ideas as well. I personally read and absorbed every one.
In closing, I’d like to share Autism Speaks’ pledge to be guided by your continuing input in our endeavors to guide and support autism research in North America and around the world. As always, our goal is to improve lives today as well as revolutionize the detection, prevention, treatment and cure of autism in the future.
Please help us keep the conversation going. We love hearing from you during our monthly “The Doctors Are In” webchats, in the comment section of our science blog and by email at firstname.lastname@example.org.
Follow me on Twitter @GeriDawson