Group hopes to create autism registry

Group hopes to create autism registry

EAST PROVIDENCE - The Rhode Island Consortium for Autism Research and Treatment, a group of the state's leading experts on autism research, education, health and services, has received a $1.2 million grant to create a first-of-its-kind confidential registry of every individual diagnosed with autism in Rhode Island.

Awarded by the Simons Foundation, the grant will help RI-CART create a data and resource continuum for thousands of children and adults in the state with autism spectrum disorders. Participation in the project will facilitate communication between clinical experts and families as well as provide families with important information for navigating state autism services.

"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, Ph.D., a clinical researcher at Women & Infants Hospital, assistant professor at The Warren Alpert Medical School of Brown University and co-director of the RI-CART project.

As part of the project, members of the RI-CART team with advanced training in autism assessment will offer to administer the Autism Diagnostic Observation Schedule to each individual enrolled in the project. Only a fraction of individuals with autism in Rhode Island currently have access to the ADOS, which is considered a "gold standard" measure of autism symptoms. Offering the ADOS to all children and adults with autism could greatly improve the accuracy of autism diagnoses. Participants will also have access to resource staff who can provide information on autism and available services.

During the next three years, RI-CART hopes to enroll over 1,000 children and adults with autism. For information about RI-CART, call 401-432-1200, email RICART@Lifespan.org, or visit www.AutismRI.org .