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Patient Perspectives - Sophia Colamarino

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Sophia Colamarino, Vice President for Research,
Autism Speaks
September 2008

Last year, Autism Speaks awarded $30 million in research grants to help improve the understanding, diagnosis and treatment of autism. This developmental disorder strikes 1 in 150 individuals, making it more common than pediatric cancer, AIDS, and diabetes combined.

Because of its belief in making information about the latest scientific advances available and accessible to families affected by autism, Autism Speaks supports Open Access, and is currently looking into how to offer the full text of research papers funded by the organization to all interested members of the autism community.

Making scholarly journal papers freely available puts the power of information into the hands of all those working to fight autism and other disorders and diseases. Giving individuals with autism and their families access to the latest research findings empowers them to be better, more informed advocates by allowing them to read, first-hand, what progress is being made on various research fronts.

“We are working on a proposal that would require scientists who receive our research grants to deposit their scholarly papers in a publicly accessible database,” says Sophia Colamarino, Ph.D., Autism Speaks vice president of research. “We believe it is important that the research papers that result from our funding be readily available to anyone with an interest in autism research. Better access to this information can only lead to positive things, whether it’s more effective advocacy or further research advances.”

When Colamarino came to Autism Speaks after years as a researcher in the academic world, her free access to journals came to a halt because she was no longer formally part of an academic institution. She realized that there was no central way of finding all of the articles sponsored by the organization in the public domain. And, when she did locate one, it was expensive to obtain a copy. Colamarino realized if she was having a hard time, the families of those with autism, had it even tougher. They were hungry for the same information and had even more limited budgets.

“Families are incredibly resourceful in using the Internet to find information about autism and autism research, but they do not have easy access to scientifically reviewed literature.” says Colamarino. “They are inundated with information that may not always be credible, and yet they are unable to read the most scientifically rigorous data. It’s time for that to change.”

Autism Speaks posts press releases on its web site, www.autismspeaks.org, summarizing research findings, and families can read abstracts, but complete articles have to be viewed from source publications that typically charge a fee.

That’s why Colamarino is working on a proposal to require all future scientists who receive the organization’s funding to archive their findings on a publicly accessible database, such as PubMed Central.

She says she hopes these efforts will create a snowball effect that sets the standard for others funders to make access to their research publications freely available. “The end game is that we want to find treatment and prevention for autism,” says Colamarino. “You never know, public access may be the thing that breaks it open.

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Prepared for SPARC/ATA by Caralee Adams