The Interactive Autism Network (IAN) is an online setting bringing together individuals affected by autism spectrum disorder (ASD) and researchers studying ASD. The mission of IAN is to accelerate ASD research in order to improve the lives of people living with this disorder. IAN has fulfilled an important need by offering valuable services to the research community and contributes directly to knowledge about ASD through peer-reviewed publications. IAN also involves the community in the research enterprise by providing clear, family-friendly, evidence-based information about ASD and ASD research.
IAN’s research registry currently has a registration of nearly 20,000 children and adults with ASD and 30,000 family members. These individuals participate in a complex self-report protocol consisting of baseline questionnaires, standardized instruments and one-time surveys. The registry also provides an avenue through which collaborators and independent researchers can recruit these individuals into research studies. The data that IAN collects from families has enabled nearly 500 ASD research projects to recruit participants.
IAN also engages the public and IAN families through IAN Community. The purpose of this resource is to educate the public about ASD, ASD research and the importance of research participation through articles, blogs, webinars, interactive features and e-newsletters. These efforts also aim to enhance research participation while providing information to research participants about the studies in which they have participated. This site has logged nearly 740,000 visits; its quarterly e-newsletter has a circulation of 24,000.
Paul Lipkin and his colleagues will continue to sustain and support advancements in the registry, continue recruitment and retention of participants, and maintain ongoing curation and distribution of IAN data. They will also provide ongoing support and development for IAN sub-community cohorts, including the Simons Simplex Community (SSC@IAN), the Autism Inpatient Community (AIC@IAN), the Kaiser Permanente Community (KP@IAN) and the Rhode Island Consortium for Autism Research and Treatment (RI-CART@IAN), along with the development of other Simons Foundation initiatives. Continuation and expansion of the IAN will further new scientific and clinical discoveries in ASD research, and empower families to better understand and cope with the effects of ASD.