Objectives: To demonstrate the potential and viability of an online system to collect extensive longitudinal information about individuals with ASD and their families, provide the research community with a valid scientific dataset, link the dataset to other sources including clinical databases, recruit subjects for a vast array of research projects, involve the public in research priority setting, and educate the public about the importance of research.
Methods: IAN developed an online system consisting of a longitudinal research study and a community that fosters bi-directional exchange between families and researchers. The IAN study uses the Health Research Management Platform (HRMS) developed by Medical Decision Logic, Inc. Parents or guardians of individuals with ASD and independent adults with ASD use this platform to answer questions about themselves and their families, including the completion of standardized autism-related assessment instruments. The extensive data collected, along with appropriate subject consent, enables the project to provide recruitment assistance for U.S. research projects and a large longitudinal dataset internationally. A web-based authoring environment supports ongoing development based on the information needs and collaborative efforts of families and individuals with ASD, researchers, policy makers, and the therapeutic community.
IAN hosts a website with interactive and community features that provides opportunities for the public to discuss and learn about ASDs and ASD research, fostering subject participation, community involvement, and researcher/community trust.
Results: From April 2007 to November 2009, the study consented 31,689 individuals with ASD and their families: 11,749 are children and 516 are adults diagnosed with an ASD. More than 230 research projects have applied for or are using IAN subject recruitment services or data. The IAN Community has over 14,000 members and is visited by approximately 1,000 people per day. Over 15,000,000 pages have been viewed. An information dashboard that supports policy decisions at a state level was developed in collaboration with the Missouri government. IAN has been funded by the National Institutes of Health to integrate its data with the National Database for Autism Research (NDAR), which will, in turn, link to other important research datasets. Two ongoing data validation studies of parent-reported data will be completed by the May 2010 meeting. IAN is currently funded to assist in the collection of biomaterials from 2400 families, doubling the number of available ASD individual samples worldwide.
Conclusions: IAN demonstrates that online research environments are feasible, and can have a powerful impact in facilitating disease-specific research and public knowledge in a short period.