Rhode Island is emerging as a national leader in innovative, integrated research and treatment for autism spectrum disorders. With regard to serving people with developmental disorders, the state has a deep tradition with strong relationships among academia, government, educators, service providers and families. Demographically, Rhode Island is a microcosm of the U.S.; it has a relatively stable population located within a small geographic region, which works well for longitudinal and population-based epidemiological studies.
Eric Morrow and Stephen Sheinkopf are leading a new study involving a sizable proportion of the children and adults living in Rhode Island and surrounding communities who are affected by autism or related developmental disorders. The researchers aim to enroll participants who are representative of the Rhode Island population, after they are carefully assessed using the Autism Diagnostic Observation Schedule.
The Rhode Island Consortium for Autism Research and Treatment (RI-CART), which represents the network of care and service providers participating in this study, includes clinicians from all major Rhode Island hospitals and behavioral health care centers, investigators from Brown University and its Alpert Medical School, educators from Rhode Island College, parents from a nationally recognized autism advocacy organization called The Autism Project, and representatives from the Rhode Island Department of Health and the Rhode Island Department of Education.
Morrow and Sheinkopf’s teams plans to enter their data, which will include biosamples such as DNA and cell samples, into the RI-CART de-identified research registry. The goals of the study are to develop a registry for future research involving genetic, population and treatment data. The researchers plan to share this resource with other qualified investigators. Plans to network RI-CART participants with other national efforts, including the Interactive Autism Network, are also in development.