RI-CART receives $1.2M grant to create confidential registry of every individual diagnosed with autism

The Rhode Island Consortium for Autism Research and Treatment (RI-CART), 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. The RI-CART resource will be used to support critically-needed research projects. 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. The registry project is also supported by funds from the Brown University Institute for Brain Science, the Norman Prince Neuroscience Institute, and the Alpert Medical School Department of Psychiatry and Human Behavior which catalyzed RI-CART activities in the fall of 2012.

"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 a partnership between researchers and families, the RI-CART resource will be a uniquely collaborative approach to research."

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 (ADOS) 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, as well as potentially improve the treatment that families receive. Participants will also have access to resource staff who can provide information on autism and available services, and who can help connect families to resources in the community.

During the next three years, RI-CART hopes to enroll over 1,000 children and adults with autism. This will be the first step in the long term goal of enrolling all individuals with autism in Rhode Island in this unique research network.

Rhode Island's small size and stable population is a big asset for this project. With just over one million residents over 1,000 square miles, Rhode Island is the smallest state in the nation and can be travelled in about an hour. Despite the small size, there is a very deep tradition of serving families with developmental disabilities, and also a relatively extensive range of service options. In addition, the state has a less complex system of care and service provision, with a single academic medical center in Brown Medical School, a relatively unified medical information system, and a strong record of working collaboratively across academic, government and private sectors. These qualities enable RI-CART to reach interested participants quickly and stay in touch over time and even generations. Team members can travel to clinics, service providers and even homes throughout the state to help enroll people into the registry and facilitate ongoing participation. This sort of "face-time" between families and researchers is planned to be the RI-CART trademark and may represent a fairly unique contribution that Rhode Island can make to autism research. This project is a pilot, but in the future, RI-CART researchers hope to help catalyze this approach at other sites and form collaborative networks with these sites around the nation.

"The Framingham Heart Study - through collaboration between a community and researchers -- helped identify many of the major causative factors and characteristics of heart disease. While there has been much hopeful progress in autism research in recent years particularly as a result of ambitious team science, we are behind in our understanding and treatment by comparison to other medical conditions, such as heart disease", said Eric Morrow M.D., Ph.D., an assistant professor in biology at Brown University and genetics researcher at Bradley Hospital. Morrow is the principal investigator on the Simons grant. He will lead the project with Sheinkopf, which will also collect DNA, and other bio-samples, including those that will allow studies of environmental exposures. "Brown University and Medical School researchers have a very strong track record with this kind of population and longitudinal research. Autism poses many urgent challenges, and this sort of project offers an important opportunity for progress."