2010 heralded the celebration of Autism Speaks' 5th anniversary and also offered a time to reflect on the results of the investments made in those first five years. A survey developed to assess the results, outcomes and impact of those investments was sent to all recipients of grants that began in 2005 or later and were completed by summer 2010. The web-based survey evaluated 107 completed grants that were awarded after Autism Speaks' inception. We asked the scientists to briefly summarize and categorize the results of those grants. We gathered information on the number and methods of sharing the findings with the scientific community and the public. We also asked whether subsequent grants were acquired for further research based on data collected in the Autism Speaks grant – a measure of successful leveraging of our initial investment.
The participation was enthusiastic: 94% of the researchers polled completed the surveys. The reported results were evaluated in three ways. First, the findings were categorized as novel discoveries that break new ground in autism research, extensions of previous findings, or “negative” findings that did not yield a clear result or a result that was uninformative for advancing the study.
Autism Speaks' investments yield novel discoveries Overwhelmingly, the results were novel discoveries, suggesting that our review system is selecting innovative proposals to advance autism science.
Next, we wanted to know what the investigators discovered. The results were broken down into eight categories, spanning the range of autism science from diagnosis to risk and mechanism discovery through to translation of proven treatments.
The largest chunk (44%) of research dollars supported work on the biological mechanisms underlying autism and the search for a valid biomarker that might one day replace the “behaviorally-defined” nature of an ASD diagnosis. An understanding of the biology at the core of autism offers the greatest hope for future therapies as well. New efforts to diagnose, screen and subtype ASD made up the next chunk (22%). Three categories were nearly equal (between 8-9%), including the discovery of new methods and technologies and the search for environmental risk factors or gene-environment interactions. Of course, the development and validation of novel treatments remains a priority and shared this spot.
The remaining less than 10% of funds were shared by efforts to uncover genetic risk factors, estimate prevalence and disseminate what we currently know. The last category gave us a bit of pause. Perhaps dissemination deserves greater consideration in the future? After all, without appropriate attention to the sharing of exciting research results, we cannot hope that the broadest swath of the community will reap the benefits. Assessment of Impact
The science staff also evaluated the results from another perspective: What type of impact on people's lives did the research have? This type of analysis can have quite a bit of impact on future funding decisions. We hope to support science that spans the breadth of the need in autism science from discovery through translation of treatments to dissemination of those treatments, for the purpose of improving the lives of people with ASD and their families. The yearly process of updating the strategic plan helps us take a critical look at the field of autism science to highlight areas of greatest need. Are we matching that need with our funding? The greatest proportion of our funded research influenced future research strategies, providing new avenues to explore and ideas to test in order to understand this perplexing disorder. Since we do not yet have a comprehensive sense of autism risk nor the involvement of different neuronal elements in autism biology, this is a very important piece of the puzzle. The second most common type of result is a translation of basic science into novel diagnostic and treatment methods. Obviously, this is an extremely important area of focus, to take our large investment in basic science and push it forward to create something useful for people with ASD and families.
The next most common category contains new methods for assessing autism risk. Our investments in etiology, be it genetic or environmental, are merely academic exercises unless we can convert them into meaningful tools that help the community understand who is at risk for developing ASD.
Each individual with ASD is unique and a treatment should be tailored as such. This is the hope of medicine in the future, but we wish to make it the reality of our community today. Thus, facilitating an individualized approach to treatment is the fourth most common category of funded result.
We also asked investigators whether and how they disseminated their results. Science we funded fed back to the research community and the public in more than 1,000 ways, including presentations at conferences, book chapters, peer-reviewed publications and of course, talks for the public.
Dissemination of Research Results
|Presentations at scientific conferences||538|
|Peer-reviewed journal publications||190|
Attracting the best minds to the field of autism research
Fellowships and grants are key in attracting new scientists to the field. Grants allow seasoned scientists in another area of research to apply their expertise and knowledge to autism. Fellowships, on the other hand, can lure bright, young students to the field of autism research and help them succeed. Our hope is that the fellowships will be pivotal in motivating these young scientists to devote their careers to autism research. We assessed the outcomes of the first set of fellowships we granted at Autism Speaks, asking first whether the fellowship was the fellow's first foray into the autism field. For close to 88% of fellows, this was their first experience in conducting autism research, and 95% of fellows reported that they intended to stay in the autism field. One-hundred percent of fellows told us that the fellowship was instrumental in motivating them to enter the autism field.
We were also interested in the impact of our grants on the research assistant and lab personnel who were involved in the research we funded. These people aren't fellows, but rather are paid research staff. Interestingly, the first 107 grants funded 226 research staff and close to 80% were new to the field of autism research. Remarkably, 72% of the staff have decided to remain in the field.
But perhaps the most important statistic for a science advocacy organization is the one that tells us how effectively our investments lead to further funding to advance a particular research question. We asked investigators if the data collected with Autism Speaks' investment allowed them to successfully compete for further funding on the topic they studied, and if so, where and how much. The results were extremely rewarding. For each dollar we invested in autism science, our investigators leveraged it for nearly $10 in further funding! Specifically, we invested $9,941,200 in our first set of grants and leveraged close to $100 million ($98,635,143). And this is a conservative estimate given that some of the grants we surveyed had just been completed and leveraged funding typically takes an additional 2-3 years. That leveraging is certainly a better bet than one can get in any traditional investment, and we are particularly happy to share this news with the community. This is the best kind of investment one can make – an investment in the future of all those who struggle with ASD.
Funding leveraged from Autism Speaks' Initial 107 Grants
|Type of funding||Amount leveraged|
|Federal or national research grants||$77,722,174|
|Private research grants||$17,877,706|
|Other research grants||$1,779,538|
|State/province research grants||$1,255,724|
I want to personally thank each of you who donated to these efforts. I hope you are pleased with the outcomes we have achieved thus far. We recognize that this is just a first step in our efforts to fund science to improve the lives of people with ASD and their families. We still have a long way to go and success depends on our partnership.
Chief Science Officer, Autism Speaks