Interactive Autism Network to join National Patient-Centered Clinical Research Network

Kennedy Krieger InstituteJul 31 2015

The Interactive Autism Network (IAN), a project of the Kennedy Krieger Institute supported by the Simons Foundation, was approved today for a three-year $1.6 million funding award by the Patient-Centered Outcomes Research Institute (PCORI) to be part of PCORnet, the National Patient-Centered Clinical Research Network.

Founded in 2006, the Interactive Autism Network is one of seven health data networks approved by PCORI's Board of Governors to be added to this national health research resource, which PCORI began developing in early 2014.

A large collaborative initiative, PCORnet is designed to link researchers, patient communities, clinicians, and health systems in productive research partnerships that leverage the power of large volumes of health data maintained by the partner networks. PCORnet will enable the nation to conduct clinical research more quickly and less expensively than is now possible and will ensure that research focuses on the questions and outcomes that matter most to patients and those who care for them.

One of 34 health data networks that will comprise PCORnet in its second phase of development, the Interactive Autism Network will contribute expertise and resources focused on autism spectrum disorder (ASD), which affects an estimated 1 in 68 children in the U.S. As a family-centered research network, IAN has over 50,000 participants - children and adults with ASD, along with immediate family members.

The PCORI award, approved following a competitive selection process, will support the Interactive Autism Network's efforts to bring together the autism community and researchers to accelerate the pace of new discoveries and empower advocates to improve the lives of individuals with ASD. In particular, under the direction of co-principal investigators Drs. Kiely Law and Robert Findling of Kennedy Krieger, IAN will engage more minorities and adults with ASD to both participate in research and help determine the research agenda. The award also makes possible a collaboration with Cincinnati Children's Hospital to fully engage their patients in autism research and provide families, researchers and clinicians with better information about ASD.

"We're thrilled to receive this award, not only because of the opportunities it offers to the advancement of autism research, but also because it is an acknowledgement of our historic experience and success as one of the first patient powered research networks," said Paul Lipkin, M.D., Director of the Interactive Autism Network at Kennedy Krieger Institute. "Most importantly, this award recognizes autism as the major public health concern that it is, due to its high prevalence and significant medical, economic and social burdens."

"We're delighted to welcome the Interactive Autism Network into our mutual efforts to build what we intend to be a premier national resource for conducting high-quality, patient-centered clinical research," said PCORI Executive Director Joe Selby, MD, MPH. "IAN will be a superb addition to the other PCORnet partners as PCORnet readies to begin an exciting second phase of expansion and the launch of several research studies."