Newswise — BALTIMORE, MD – (August 26, 2015) The Interactive Autism Network, a project of the Kennedy Krieger Institute, is now partnered with the Simons Foundation Autism Research Initiative (SFARI) to advance and expand internet-mediated autism research. This powerful collaboration centers upon a shared vision to grow, support and engage communities of individuals with autism spectrum disorder (ASD) and their families in an online environment designed to accelerate ASD research.
The Interactive Autism Network (IAN) provides a secure online setting that connects researchers with more than 50,000 individuals with ASD and their family members for participation in autism research. IAN is also home to a comprehensive online library and meeting place focused on ASD research. ASD currently affects an estimated 1 in 68 children in the U.S.
The Simons Foundation’s two-year, $2.18 million funding commitment makes it possible for IAN to continue the important work it has undertaken in partnership with the ASD community for nearly a decade, while also expanding to accomplish important goals, including:
• Increased Research Participation – By increasing the number of individuals with ASD and their families registered with IAN, autism research will improve with findings that are more representative of the broad ASD community. This includes greater inclusion of adults with ASD, who are underrepresented nationwide in both research, and in the setting of the research agenda.
• Research Across the Lifespan – Researchers often collect information at a single point or over a short period in time. With its large number of participants ready to be matched with studies, IAN and Simons will work with scientific investigators to increase research efforts that follow children as they grow and develop.
• Community Growth and Engagement – The development of new research communities across the country that share common geography, service providers or interests will enhance family participation, advance knowledge, and better reflect the priorities of those affected by ASD.
“Since its inception IAN has been a forward-thinking platform connecting researchers with individuals and families impacted by autism,” says Wendy Chung, M.D., Director of Clinical Research at SFARI. “IAN directly facilitates research that leads to important — and practical — improvements in the lives of those impacted by ASD, and then works to disseminate relevant scientific information to the autism community. The Simons Foundation is happy to continue to support the thriving partnership between the autism community and IAN— a pairing that will ultimately lead to improved understanding of autism.”
“By partnering with the Simons Foundation, we strengthen our collective effort to bring individuals with ASD, families, service providers and researchers together to develop better ways to improve the lives of those living with this disorder,” says Paul Lipkin, M.D., Director of the Interactive Autism Network at Kennedy Krieger Institute. “We can now expand our ability to explore concerns across the lifespan of those with autism, ensuring that we are tackling issues that address the needs of individuals of all ages, from the newly diagnosed to the teenage years to adulthood.”
Founded in 2006, IAN was developed and launched with the support of Autism Speaks. With additional funding from the National Institutes of Mental Health in subsequent years, IAN grew its efforts to match members of the autism community with researchers to accelerate the pace of new discoveries and empower advocates to improve the lives of individuals with ASD.
IAN was recently approved to join PCORnet, the National Patient-Centered Clinical Research Network funded by the Patient-Centered Outcomes Research Institute (PCORI). As part of PCORnet, IAN will link ASD researchers, patient communities, clinicians, and health systems in productive research partnerships to leverage the power of large volumes of health data to conduct clinical research more quickly and less expensively than is now possible.
To learn more and to join IAN, visit http://www.iancommunity.org.
ABOUT THE SIMONS FOUNDATION
The Simons Foundation’s mission is to advance the frontiers of research in mathematics and the basic sciences. Simons Foundation Autism Research Initiative (SFARI), launched in 2003, is a discrete scientific research program within the Simons Foundation’s overall suite of programs. 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. SFARI’s immediate priority is to drive research that benefits individuals challenged by autism spectrum disorders, but its research programs are expected to yield insights into the neural mechanisms of fundamental human capabilities, thereby complementing the foundation’s work in other basic sciences.
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 www.kennedykrieger.org.