The Patient-Centered Outcomes Research Institute has awarded the Interactive Autism Network (IAN) $1.6 million to become the newest member of its national research database. The grant will enhance this national database with a wealth of autism-related information contributed by some 50,000 people affected by autism.
The award also supports a new partnership between IAN and the Autism Speaks Autism Treatment Network, through the ATN’s site at Cincinnati Children's Hospital.
Founded in 2006 by Baltimore’s Kennedy Krieger Institute, IAN is a family-centered research network that uses an online platform to collect information from some 50,000 individuals and families affected by autism. Autism Speaks is a founding supporter of IAN and continues to work closely with the network’s leadership. Earlier this year, the Simons Foundation Autism Research Initiative assumed IAN’s financial support.
“This new project will build an important new bridge between the remotely collected information from IAN's online community and the clinical information collected from families participating in research at our ATN center in Cincinnati,” says Paul Wang, Autism Speaks’ head of medical research. “We anticipate that this connection will speed urgently needed patient-centered research and the sharing of research results with clinics and families nationwide.”
The grant makes IAN the newest partner in the Patient Centered Outcomes Research Network, alongside 33 other health data networks. Taking advantage of the large network, IAN plans an outreach campaign to recruit more minority families and adults affected by autism into its online community. As always, the goal is for these individuals and families to participate in studies and help guide the future direction of autism research.
Through its role in the new partnership, the Autism Speaks ATN center at Cincinnati Children’s Hospital will enhance the engagement of its patients in autism research. It will also explore new ways to provide families, researchers and healthcare providers with the best evidence-based information about autism.
Cincinnati Children’s is one of 14 sites in the Autism Speaks ATN. The Cincinnati ATN is led by developmental pediatrician Patty Manning.
Learn more about the Autism Speaks Autism Treatment Network here.
"We're thrilled to receive this award,” says IAN Director Paul Lipkin, “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. 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."