Interactive Autism Network-Core Activities
Hugo W. Moser Research at Kennedy Krieger, Inc.
The Interactive Autism Network (IAN) accelerates (ASD) research to improve the lives of people living with this disorder. IAN fulfills an important need by offering valuable services (subject recruitment assistance and data distribution) to the research community; by involving the community in the research enterprise by providing clear, family-friendly, evidence-based information about autism and autism research; by contributing directly to knowledge about autism through peer-reviewed publications; and by supporting important insurance reform and safety advocacy activities. Since 2007, IAN has engaged nearly 43,000 participants in its innovative online research. These participants include more than 16,000 children with ASD; 1,000 adults with ASD; 10,000 siblings; and over 16,000 parents or legally authorized representatives. They have participated in a complex self-report protocol consisting of baseline questionnaires, standardized instruments, and one-time surveys. In addition, IAN educates the public about ASD, ASD research, and the importance of research participation to help increase public understanding, enhance research participation, and create a feedback loop that provides information to research participants about the studies in which they have participated. Since its launch in 2007, IAN Community was visited over 2.5 million times with readers from 170 countries viewing nearly 30 million pages. Though highly interrelated, IAN’s core activities can be categorized as follows: Aim 1. Conduct ASD Research Aim 2. Recruit and Retain Participants Aim 3. Curate and Distribute Data Aim 4. Provide Recruitment Services Aim 5. Educate the Public Aim 6. Facilitate IAN Scientific Advisory Board Aim 7. Migrate IAN Research to an updated technology platform Aim 8. Develop new IAN Community website system and migrate content to new system