Autism Speaks launches Autism Care Network to improve autism care across North America
First of its kind learning health system for autism connects 20 sites to bring better autism care to communities fasterApril 29, 2021
NEW YORK, April 29, 2021 -- Autism Speaks announces the launch of the Autism Care Network, the first and only learning health network of its kind focused on bringing better autism care to communities, faster. A groundbreaking partnership of 20 premier autism centers in North America, brought together by Autism Speaks and funding partners, the Autism Care Network aims to transform how better care is developed for people with autism and their families.
The Autism Care Network is supported by Autism Speaks, Health Resources Services Administration (HRSA) Autism Intervention Research Network on Physical Health, the J. Donald and Laurelle Lee Family Foundation and the National Patient-Centered Clinical Research Network (PCORnet).
As a learning health network, the Autism Care Network will deliver faster implementation of best practices and research findings about autism care. Network sites collect data from patient visits, test what treatments deliver the best outcomes and deliver new knowledge to Network partners and community providers so they can make the right decision for their patients.
Built on more than a decade of success in improving autism care, the Autism Care Network combines this success with an innovative learning health system model to rapidly deliver better autism care practices. The Network brings people on the spectrum and their families, researchers and healthcare teams together to find solutions that improve care and quality of life years earlier than traditional research.
“At each center, we work directly with children with autism and their families to find out what they need, and through collaboration with providers and researchers across the Network, use patient data to learn which treatments work and who they work for,” said Donna Murray, Ph.D., vice president of clinical programs at Autism Speaks, a founding leader of the Network. “That information gets back to providers through the Network, and centers practice these methods and push that information into their communities to get the right care to the right patient at the right time.”
A learning health system uses real-time clinical information from patient records, allowing network sites to capture what patients and families are sharing as concerns with their providers. Using a continuous improvement loop, this discovery platform allows researchers to track treatments and which patients they helped.
“Traditional research takes up to 17 years to be put into practice in a provider’s office,” said Karen Kuhlthau, Ph.D., professor of pediatrics at Massachusetts General Hospital and director of the Autism Care Network’s research coordinating center. “With patient and family needs driving where we focus our efforts, and a system that lets us answer these questions quickly, the Autism Care Network will accelerate the process of moving best practices identified by research into the clinical setting to deliver more personalized and effective care.”
Because many people with autism and their families have struggled to access quality autism services where they live, on top of the challenges due to COVID, the Network is uniquely poised to reach underserved groups with data-driven solutions that reach families at the local level.
“As healthcare teams work with individuals and families on the spectrum, they can access better care practices based on a more diverse, representative clinical research population to answer questions and create solutions for everyone, including underserved communities,” said Daniel Coury, M.D., developmental behavioral pediatrician at Nationwide Children’s Hospital in Columbus, Ohio, and medical director of the Autism Care Network.
As a consortium that is focused on ongoing collaboration, learning and dissemination of best practices, the Autism Care Network will transform the delivery of quality, evidence-based autism care to people on the spectrum regardless of their location, which leads to improved health outcomes and quality of life.
The 20 Autism Care Network sites are:
- Children’s Hospital Los Angeles
- Children’s Hospital of Philadelphia
- The Kelly O’Leary Center for Autism Spectrum Disorders at Cincinnati Children’s Hospital Medical Center
- The Lurie Center for Autism at the Massachusetts General Hospital for Children
- Nationwide Children’s Hospital, Columbus, Ohio
- Holland Bloorview Kids Rehabilitation Hospital, Toronto
- University of Alberta and Glenrose Rehabilitation Hospital
- The Center for Autism & Neurodevelopmental Disorders at the University of California — Irvine
- University of Missouri/ECHO Autism Communities
- The Center for Autism and Developmental Disorders at the University of Pittsburgh Medical Center
- Vanderbilt Kennedy Center at Vanderbilt University Medical Center
- The Division of Developmental and Behavioral Pediatrics at the University of Rochester Medical Center
- Phoenix Children’s Hospital
- Prisma Health Children’s Hospital-Upstate SC
- University of Nebraska Medical Center, Munroe-Meyer Institute
- University of Virginia Children's Hospital-Division of Neurodevelopmental and Behavioral Pediatrics
- University of Wisconsin-Madison, Waisman Center
- Hospital for Special Care, New Britain, Connecticut
- The Eunice Kennedy Shriver Center at University of Massachusetts Medical School, Center for Autism and Neurodevelopmental Disorders
- MetroHealth Autism Assessment Clinic, Parma, Ohio
To learn more about the Autism Care Network and to visit a center near you, please visit autismcarenetwork.org.