The Rhode Island Consortium for Autism Research and Treatment has announced a $1.2 million grant from the Simons Foundation In New York City to create a confidential registry of every individual in the state diagnosed with autism.

The grant will support RI-CART's efforts to create a data and resource continuum for thousands of Rhode Island residents with autism spectrum disorders and facilitate communication between families and clinical experts, enabling families to better navigate state autism services. As a first step in the project, RI-CART hopes to enroll more than a thousand children and adults with autism over the next three years. Enrollees then may opt to have a trained RI-CART team member administer the Autism Diagnostic Observation Schedule — considered the "gold standard" for measuring autism symptoms. Administering the ADOS to all Rhode Islanders with autism could significantly improve the accuracy of autism diagnoses as well as improve treatment of the disorder. Participants in the registry also will have access to staff who can provide information about autism spectrum disorders and connect them to resources in the community.

In addition to the Simons Foundation, the project is supported by the Brown University Institute for Brain Science, the Norman Prince Neuroscience Institute, and the Alpert Medical School Department of Psychiatry and Human Behavior.

"This effort will link families and researchers to spur important and innovative research on the causes and treatments for individuals with autism and related conditions," said Stephen Sheinkopf, co-director of the RI-CART project. "As a partnership between researchers and families, the RI-CART resource will be a uniquely collaborative approach to research."