BALTIMORE, MD - (July 30, 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."
The funding award to IAN has been approved by PCORI's Board pending completion of a business and programmatic review by PCORI staff and negotiation of a formal award contract. PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund research that will provide patients, their caregivers and clinicians with the evidence-based information they need to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at http://www.
ABOUT THE INTERACTIVE AUTISM NETWORK
Founded in 2006, the Interactive Autism Network (IAN) is a project of the Kennedy Krieger Institute supported by the Simons Foundation. More than 50,000 individuals with autism and family members participate in ASD research through IAN's secure online setting that connects researchers with these families. IAN is also home to a comprehensive online library and meeting place focused solely on ASD research. To learn more and to join IAN, visit http://www.
ABOUT THE KENNEDY KRIEGER INSTITUTE
Internationally recognized for improving the lives of children and young adults with disorders and injuries of the brain, spinal cord and musculoskeletal system, the Kennedy Krieger Institute in Baltimore, MD, serves more than 20,000 individuals each year through inpatient and outpatient clinics, home and community services and school-based programs. Kennedy Krieger provides a wide range of services for children with developmental concerns mild to severe, and is home to a team of investigators who are contributing to the understanding of how disorders develop while pioneering new interventions and earlier diagnosis. For more information on the Kennedy Krieger Institute, visit http://www.
ABOUT THE SIMONS FOUNDATION
The Simons Foundation's mission is to advance the frontiers of research in mathematics and the basic sciences. The Simons Foundation Autism Research Initiative (SFARI)'s mission is to improve the understanding, diagnosis and treatment of autism spectrum disorders by funding innovative research of the highest quality and relevance. The foundation makes grants in three other areas: mathematics and physical sciences, life sciences, and education and outreach. The Simons Foundation's programs support basic scientific research, undertaken in pursuit of understanding the phenomena of our world.