Launching the autism learning health network blog autism speaks gas bubble retinal detachment

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Today, I’m pleased to tell you about a major milestone in the work of the Autism Speaks Autism Treatment Network (ATN) in its role as the Autism Intervention Research Network on Physical Health. The ATN/AIR-P network includes 12 medical centers across the United States and Canada, – all dedicated to delivering the best comprehensive healthcare for children and teens on the autism spectrum.

Over the next two years the ATN/AIR-P is expanding to become a learning health network in partnership with the Interactive Autism Network (IAN) of the Kennedy Krieger Institute and with the guidance of the Anderson Center for Health Systems Excellence, at Cincinnati Children’s.

This transition builds on the ATN’s longstanding mission to develop care guidelines that improve health and quality of life for people with autism. Making our new partnership with IAN possible is funding from PCORnet, the National Patient-Centered Clinical Research Network. This will bring the Autism Learning Health Network into a new national PCORnet Learning Health System Community located at the Anderson Center.

Learning health networks are multicenter collaborations of families, providers and researchers working together to drive innovation, quality, safety and value in healthcare. They do so by using the experiences of patients to guide the development of improved healthcare practices.

Our early work as the ATN/AIR-P provided the scientific evidence needed to establish that autism is frequently accompanied by a range of medical and mental health challenges. These associated health conditions include epilepsy, disordered sleep, gastrointestinal problems and anxiety disorders, to name just a few. ( See “Autism and Health: A special report by Autism Speaks.”)

Together, our ATN/AIR-P clinicians developed and published some of the first screening and treatment guidelines for these autism-associated health conditions. (See “ Pediatrics publishes research & guidelines on autism-related health issues.”)

Learning health networks are known for making effective use of technology, including electronic health records. Technology enables us to collect information with every clinic visit. This is always done in a privacy-protected manner in collaboration with participating families.

As mentioned earlier, we’ll use what we learn from the patient experience to develop improved treatments and support services for autism-related medical conditions. We’ll then test these new approaches with clinical trials and compare their effectiveness with other promising approaches.

As part of this work, we will be rebuilding the ATN Patient Research Registry in ways that will enable us to perform quality improvement analysis and introduce improved care strategies back into the clinic in a matter of months rather than years.

In 2006, Autism Speaks helped launch Kennedy Krieger Institute’s Interactive Autism Network as an online forum that enabled the families in the autism community to become active participants in research and directly link with researchers across the country. IAN continues this work today with funding from the Simons Foundation.

Our IAN partners bring groundbreaking tools and expertise for collecting reports from parents and other caregivers on the health and well-being of children who have autism, from infancy into early adulthood, while also supporting their families. This new capacity will allow the Autism Learning Health Network to engage with families between clinic visits and monitor the child and family’s advances in the home and community. We also hope to expand participation to families who are not directly receiving care at our ATN/AIR-P centers.