Statewide autism registry planned

A new autism registry is planned for Rhode Island, one of the first statewide registries to be put together, according to sources at Lifespan. The effort will be funded by a soon-to-be-announced grant of more than $1 million from the Simons Foundation Autism Research Initiative, known as SFARI. More

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Statewide autism registry planned

RI-CART’s first project is studying primary care for those with autism, with a team assessing 150 adolescents and adults with autism to determine the full spectrum of their primary health care needs.
Posted 8/5/13

PROVIDENCE – A new autism registry is planned for Rhode Island, one of the first statewide registries to be put together, according to sources at Lifespan. The effort will be funded by a soon-to-be-announced grant of more than $1 million from the Simons Foundation Autism Research Initiative, known as SFARI. The foundation’s mission is to improve the diagnosis and treatment of autism spectrum disorders by funding and driving research.

The new award to spur the development of a statewide autism registry is tangible proof to the benefits of a new research and advocacy consortium, the R.I. Consortium for Autism Research and Treatment, or RI-CART.

One in 88 children in the United States are diagnosed with autism, according to Dr. Thomas Anders, a senior consultant to RI-CART. By establishing RI-CART’s unique model of collaboration, Anders said, “Rhode Island is demonstrating its commitment to tackling integrated scientific research on autism and autism spectrum disorders.”

RI-CART’s first project is studying primary care for those with autism, with a team assessing 150 adolescents and adults with autism to determine the full spectrum of their primary health care needs.

Organizations participating 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, and The NeuroDevelopment Center.

In an unrelated development, a new database that curates brain scans from 17 labs worldwide recently made its debut in the June 18 edition of Molecular Psychiatry.

Known as the Autism Brain Imaging Data Exchange, or ABIDE, the database provides researchers and scientists access to more than 1,000 brain scans of people with autism, with the goal of creating a large-scale evaluation of the intrinsic brain architecture in autism. The new database is the first to focus on storing and sharing brain imaging data.

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