The Rhode Island Consortium for Autism Research and Treatment (RI-CART) is creating the first statewide registry of children and adults with autism. The voluntary registry will support autism research and public advocacy by providing a rich source of anonymous information about families affected by autism, their health and quality of life, and their access to services.
“The creation of state registries such as Rhode Island’s is so important because it provides a central source of information for policy makers, healthcare professionals, researchers and families,” says Amy Daniels, Autism Speaks assistant director for public health research. “This allows a state to monitor trends in health and other outcomes over time and promotes advances in research by connecting families with researchers in their area,” she explains.
Over the next three years, RI-CART hopes to enroll more than a thousand children and adults. Its long term goal is to enroll all Rhode Islanders affected by autism.
As part of the project, researchers will offer to administer the Autism Diagnostic Observation Schedule (ADOS) free of charge to enrollees. ADOS is the gold-standard measure of autism symptoms. But only a fraction of Rhode Islanders with autism have had access to it. Participants will also be offered help connecting with services and resources in their communities.
Autism Speaks has created and supported a number of voluntary and anonymous national autism registries. They include the Autism Genetic Resource Exchange (AGRE), the Interactive Autism Network (IAN) and the voluntary patient registry created by the Autism Speaks Autism Treatment Network. Through its Global Autism Public Health initiative, Autism Speaks is also supporting the International Collaboration for Autism Registry Epidemiology (iCARE) and the creation of Ireland’s first national registry. (Follow the links for more information on each registry.) “These registries have been crucial to answering important questions related to prevalence, risk factors and services needs of individuals with autism and their families,” Dr. Daniels says.
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