Rhode Island Autism Experts Launch Consortium
Monday, July 22, 2013
"This is such an important step for Rhode Island when you consider that one in 88 children in the U.S. is diagnosed with autism and more than one million children in the country are directly affected by autism," said Thomas Anders, M.D., a senior consultant for the project. "By establishing this unique model of collaboration, Rhode Island is demonstrating its commitment to tackling integrated scientific research on autism and autism spectrum disorders."
The RI-CART group is made up of the state's leading experts on autism research, education, health and advocacy. Organizations represented in RI-CART include Bradley Hospital, Rhode Island Hospital, Women & Infants Hospital, Butler Hospital, Memorial Hospital, Brown University and its Warren Alpert Medical School, the Brown Institute for Brain Science, the Brown Department of Psychiatry and Human Behavior, the Norman Prince Neurosciences Institute, Gateway Healthcare, Rhode Island College, University of Rhode Island, The Autism Project, the Groden Network, The NeuroDevelopment Center, Rhode Island Technical Assistance Project, the Rhode Island Department of Education and the Rhode Island Department of Health, Office of Special Needs.
The consortium will work to improve the lives of Rhode Islanders with autism spectrum disorders by promoting collaborative, cutting-edge research on causes and origins, treatment, and support services.
The key objectives include:
Supporting basic, clinical and behavioral research across disciplines and institutions;
Creating a research infrastructure, including a statewide web-based research registry;
Improving and expanding diagnostic and treatment methods;
Informing state and federal policymakers about autism spectrum disorders.
Why Rhode Island is ideal
Rhode Island provides a unique setting for this sort of collaboration, according to consortium members. With just over one million residents and 1,000 square miles, Rhode Island is the smallest state in the nation and can be travelled in about an hour. The population is diverse, and the state has a single department of health, a children's hospital and a medical school. These qualities enable RI-CART to share resources and expertise; enroll representative research sample populations quickly, and study them over time; test and rapidly roll out new ways to improve clinical care, and access government and academic leaders to develop new research collaborations and public policies.
"Collaborative, multi-disciplinary and multi-institutional teams such as RI-CART can be difficult to build, yet are essential for tackling important problems posed by autism," said Eric Morrow M.D., Ph.D., assistant professor at Brown University, co-director of the RI-CART Research Committee and an autism genetics researcher at Bradley Hospital. "The RI-CART group has fostered a clear enthusiasm for working together from the start."
Morrow continued, "The spirit has been there for several years, but it took initial seed funding from several Rhode Island institutions to accelerate the efforts. The Brown Institute for Brain Science, the Norman Prince Neurosciences Institute, Bradley Hospital, Women & Infants Hospital and the Groden Network, all invested seed funds in the project late in 2012, which enabled us to reach the point we are at today."
The first project to be launched by RI-CART is a $53,000 Rhode Island Foundation grant to study primary care for those with autism. A team will assess 150 adolescents and adults with autism to determine the full spectrum of their primary health care needs (medical, dental, and vision), as well as barriers or obstacles to obtaining primary care. This research project will be Rhode Island's first examination of the health needs of those with autism spectrum disorders.
"This is a population with more medical and specialty care needs than the average population, so we want to figure out how to streamline the process, so families don't have to struggle to receive the care they need for their loved ones," said Henry Sachs, M.D., chief medical officer of Bradley Hospital and the study's primary investigator. "The comprehensive report and recommendations from this study will hopefully lead to more effective options for care for Rhode Islanders with autism in the near future."
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