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IAN Joining in Effort to Create Autism Learning Health Network

Date Published: 
June 26, 2018

The Interactive Autism Network is joining together with the Autism Treatment Network and the Anderson Center for Health Systems Excellence to create the Autism Learning Health Network. A learning network is a group of patients, families, doctors, and researchers that uses data to improve healthcare, in this case, for people with autism spectrum disorder (ASD).

The Autism Treatment Network is working on the partnership in its role as the Autism Intervention Research Network on Physical Health (ATN/AIR-P), which includes 12 medical centers in the United States and Canada that provide healthcare for children and youth with autism. The Autism Treatment Network is part of the Autism Speaks organization.

The Autism Learning Health Network will be part of the PCORnet Learning Health System with funding by PCORnet, the National Patient-Centered Clinical Research Network. Since 2015, the Interactive Autism Network has been part of PCORnet, which seeks to engage patients, researchers, and doctors in research that matters to patients.

The PCORnet Learning Health System will be located at the Anderson Center at Cincinnati Children's Hospital Medical Center in Ohio. It will use technology that will allow patients and parents to contribute information that can lead to improved healthcare practices and policies.

The Autism Learning Health Network leadership team includes Dr. Paul H. Lipkin and Dr. J. Kiely Law, director and research director, respectively, of the Interactive Autism Network (IAN); Dr. Dan Coury and Dr. Donna Murray, of the Autism Treatment Network; and Dr. Karen Kuhithau of the Autism Intervention Research Network on Physical Health. Patient representatives will sit on the steering committee, as will researchers and coordinators from the clinical sites.

"In creating the Autism Learning Health Network, IAN and ATN/AIR-P will be building on the prior work of the ATN and AIR-P to enhance the patient-centeredness of the network through increased participation of families and clinicians in its design and implementation, looking for meaningful outcomes in children's health and well-being," Dr. Lipkin said. "The Autism Learning Health Network will reflect a joint national effort to improve the health of children with ASD with creation of national standards of care."

For more information about IAN's partners and the Autism Learning Health Network, please see below.