Skip navigation

Calls to Action

Cure Autism Now Announces Partnership With National Institute of Mental Health (NIMH) at Autism Summit Conference

Cure Autism Now and NIMH Create Largest Resource for Study of Autism; Summit Opens Public Dialogue to Develop National Autism Agenda
October 14, 2007

WASHINGTON, Nov. 19 /PRNewswire/ -- The Cure Autism Now Foundation, one of the leading funders of autism research, announced today, during the National Institute of Mental Health (NIMH) Autism Summit Conference held in Washington, D.C., a partnership with the NIMH to create the world's largest resource for the study of autism.

In 1997, Cure Autism Now (CAN) set out to create the Autism Genetic Resource Exchange (AGRE), the largest repository of DNA and clinical information from families who had more than one child diagnosed with autism or an autism spectrum disorder. AGRE is not tied to any one investigator, and acts as an open resource, available to all scientists. In record-breaking time, AGRE gathered data from over 400 families and created a collection accessed by over 100 scientists to date.

Now, thanks to a grant from the NIMH, Cure Autism Now has committed to doubling the size of AGRE to 800+ families. In partnering with the Institute, AGRE's original collection is now available to all NIMH-funded researchers at no cost.

"Basically, it is a gift of five years and $5 million of our work to the NIMH, because it will ultimately help further our collective goals of collaboration and broad data sharing," said Jonathan Shestack, co-founder of Cure Autism Now.

Cure Autism Now is proud to work with the National Institute of Mental Health, an organization that supports CAN's principles of broad data sharing. Along those lines, the Institute has made over $2 million available to other researchers with smaller autism collections, to get families to move their biomaterials to the NIMH repository over the next two years. The hope is that this repository will ultimately house data from over 2,000 multiplex families.

The Cure Autism Now Foundation is also donating a data management system to the NIMH that enables researchers to keep consistent records, facilitate data sharing and maintain benchmarks in the evaluation of autism. ISAAC (the Internet System for Assessing Autistic Children), which cost Cure Autism Now $400,000 for development, was created by Dr. Paul Law, a pediatrician at The Johns Hopkins Bloomberg School of Public Health, and is named after Law's son Isaac, who was diagnosed with autism in 1996. ISAAC will be used as the standard for data management at the National Institute of Health's Centers for Excellence -- eight centers at leading universities around the United States dedicated to finding the causes and effective treatments for autism and related disorders.

According to Shestack, the idea of designing ISAAC was to make collaboration in autism research possible by creating a standard data ascertainment and management format. No such standard has existed in the autism research community prior to now.
"We can't force researchers to collaborate but by creating a standard for data management, we can reduce the barriers and make it more likely," Shestack said.

Autism, also known as autism spectrum disorder, severely affects an individual's ability to communicate and to interact socially. The disorder currently afflicts one in every 250 children, a number which has increased substantially in the past five years. Although there has been some promising research into genetic and environmental factors, the definitive cause of autism is unknown.

For more information about the Autism Genetic Resource Exchange, call (323) 931-6577.