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Cure Autism Now's Scientific Review Council Alters the Course of Autism Research

Aug-04
October 14, 2007


Cure Autism Now founder Jonathan Shestack often compares the challenges of searching for a cure for autism to his day job - producing movies. "There are three ways you want to make a movie," says Shestack, " Good, fast and cheap. But you can only pick any two."
Cure Autism Now's Scientific Review Council (SRC) strives to achieve all three - good, fast and cheap - as they work toward uncovering treatments and a cure for autism in our lifetime. The Council's creative and innovative perspectives, coupled with its sense of urgency, will help achieve the breakthroughs necessary to solve autism.

The Scientific Review Council plays a unique role in setting the direction of the Foundation's scientific research and leveraging research dollars. Comprised of parents or other family members of people with autism who are also researchers or physicians, their personal dedication and relevant expertise help them to prioritize Cure Autism Now's research goals, objectives, and initiatives.

"We recognized very early that the most brilliant scientist, without an autistic child of his own, cannot judge the relevance of any study in terms of the urgency we are driven by as parents," said CAN founder Portia Iversen. "They can't know first hand what medical issues take precedence in our lives. That is why we decided to create the SRC, in addition to the Scientific Advisory Board, to help achieve our ultimate goal of finding treatments and a cure for autism."

Good -- Rigorous and Relevant Research

As Cure Autism Now's primary mission is to fund biomedical research in autism, the SRC's initial responsibility was to help manage the research funding process.

Utilizing the National Institutes of Health processes, research grant applications received by CAN are reviewed and scored by the Scientific Advisory Board (SAB).The SAB is composed of outstanding researchers and clinicians representing a myriad of disciplines relevant to autism research. Although experienced in their own areas, these scientists are often new to the field of autism research and therefore do not bring preconceived ideas to the review process. This board's primary responsibility is to review the grants submitted for scientific merit at their annual meeting in California.

When Cure Autism Now began the process of funding grants, decisions were made based solely on the SAB's qualitative rankings. However, after experiencing the frustration of watching seemingly beneficial proposals passed over because of concerns such as diagnostic procedures, statistical power or the experience of the investigators, CAN's founders realized that another mechanism would be necessary to change the state of autism research.

In May of 2000, Portia Iversen and Dr. David Baskin formed the Scientific Review Council. The Council relies on the skills and insights of the SAB's highly qualified reviewers, and adds to the process the ability to determine if the science funded is relevant and represents a balanced pool of research projects.

The SRC demands the research it funds to answer a question about autism that has the potential for a specific impact on scientific understanding of the disorder, whether biological or clinical. As a result of this perspective, a grant proposal may be written in such a way that the SAB finds flaws; however, if changes to the study design would result in research that is both scientifically valid and insightful, the SRC works with the investigator to ensure that viable ideas are not lost due to technicalities. This might entail providing specific feedback and an opportunity for resubmission to potential investigators whose proposals the SAB has critiqued and found wanting or teaming an investigator who lacks specific expertise with a mentor or collaborative partner to advise and support them.

Since their efforts often bring new researchers into the field, the SRC takes on the responsibility of creating support for them that will help to develop balanced, rigorous and meaningful science. After grants are funded, the SRC ensures accountability and quality through review of mid-cycle and final reports, discussions with investigators and occasional site visits.

The SRC's dedication to collaboration and supporting new research is critical to the advancement of the scientific community's understanding of this complex and multidisciplinary disorder and a significantly improved collective wisdom. "This is what Cure Autism Now does best - identifies a need, quickly selects and brings together the most qualified people, and comes up with a consensus to move the field forward," says SRC member Dr. Ricki Robinson.

Toward this end the SRC has developed several think tanks - intensive meetings of prominent researchers who are able to shed light on the various factors involved in researching and treating people with autism. These think tanks have brought new researchers from related disciplines into the field of autism, as well as contributed valuable consensus information to the field.

Fast - Increasing the Pace of Scientific Research

In 1995 when Cure Autism Now was founded Jonathan Shestack and Portia Iversen were often told that they were wasting their time, that "you can't hurry science." The Scientific Review Council plays a critical role in proving these experts wrong.

At a Cure Autism Now think tank in May 1996, parents posed this question to scientists: What is the single most important thing the organization can do to speed progress in autism research? The answer: Establish a DNA resource that would make biological samples from well-characterized families with more than one child with autism, available to the scientific community at large.

Cure Autism Now did not wait for anyone else to do this; they began work on building the Autism Genetic Resource Exchange (AGRE), the first and largest collection in the world of genetic and phenotypic information from families who have more than one child with autism. AGRE now offers an unprecedented (and growing) databank of 450 multiplex families with genetic and accompanying clinical data open to the entire scientific community. The impact of this think tank has been monumental - expanding the number of researchers studying autism genetics from six to over 100. This is the model of "hurrying science" that drives the Scientific Review Council.

Knowing that a similar mindset could produce significant results in other areas, the SRC steered CAN toward developing focused scientific initiatives in addition to funding research that is submitted through the annual grant cycle. As opposed to strictly waiting for the best ideas to come across the transom in the form of pilot or young investigator research projects, the SRC determines specific areas of exploration they deem to be of primary importance in discovering treatments or a cure for autism. The Council actively seeks out investigators, requests proposals or contracts research that address areas that can make a significant impact on the field. The current Cure Autism Now scientific initiatives include: Neural Retraining, Biomarkers, Environmental Factors, Genetics, Innovative Technology for the Treatment of Autism, and most recently, Brain Development.

Cheap - Maximizing the Impact of Limited Research Funds

The financial resources available for investment in autism research are limited. While significant progress has been made since Cure Autism Now was founded, autism research still remains incredibly under-funded.

The Council is acutely aware of these funding limitations. As family members of individuals with autism, SRC members are driven to find opportunities to leverage its funding dollars to ensure the greatest impact from the investment. AGRE is the premier example of how CAN has leveraged their funding, enabling 130 research projects representing millions of dollars to be conducted in autism.

Most of Cure Autism Now's research grants are structured as Pilot and Young Investigator awards. These awards provide seed funds so that initial data and findings can be established and later supported and expanded in more extensive studies funded by the National Institutes of Health or the pharmaceutical industry. The knowledge and experience of senior researchers is often brought to bear on the topic of autism when a junior researcher in their lab receives a small grant. Similarly, collaborations and think tanks bring together researchers who can share what they know and build on that knowledge together, rather than requiring each investigator to reinvent the wheel.

Another way the Council works to maximize impact and reduce costs is by offering some projects smaller bridge grants, so that the investigator can obtain preliminary data or demonstrate the efficacy of his or her methodology before Cure Autism Now commits to funding the entire project.

Finally, the Cure Autism Now Foundation and the field of autism benefit greatly from the generosity of those in the scientific community, who volunteer their already limited time to serve as the members of the Scientific Review Council, the Scientific Advisory Board, the AGRE Steering Committee, as well as the Board of Directors. Their contributions allow available funding to be applied directly where it is needed most -- the science of uncovering the causes of and developing treatments and a cure for autism.

The Scientific Review Council continues to make an impact on the world of autism research, bringing a necessary urgency and passion to the field. The Council's cautious yet innovative approach is characterized by Council member, author and researcher Matthew Belmonte as "rigorous enough to support science but permissive enough to explore new things." Those who support the Cure Autism Now Foundation are hopeful that this delicate blend of creativity and expertise will continue to open new doors and reveal novel findings leading to a brighter world for all individuals affected by autism.