International Meeting for Autism Research (London, May 15-17, 2008): Developing the subject matching system for the Interactive Autism Network (IAN)

Developing the subject matching system for the Interactive Autism Network (IAN)

Thursday, May 15, 2008
Champagne Terrace/Bordeaux (Novotel London West)
P. K. Maulik , Mental Health, Johns Hopkins School of Public Health, Baltimore, MD
A. R. Marvin , Medical Informatics, Kennedy Krieger Institute, Baltimore, MD
P. Law , Medical Informatics, Kennedy Krieger Institute, Baltimore, MD
Background: Many autism research studies are delayed or fail because of difficulties with subject recruitment.

Objectives: To establish an efficient web-based matching system to facilitate efficient subject recruitment for Autism Spectrum Disorder (ASD) research projects.

Methods: A literature review of USA-based studies published in PubMed and PsycInfo between 2000 and 2005 was performed to identify inclusion/exclusion criteria and demographic characteristics that autism researchers use most. This information provided the core content for the Interactive Autism Network (IAN) database.

Results: The initial literature search generated 2,890 articles. Saturation point for generation of criteria for incorporation into the database was reached after detailed review of the initial 166 eligible articles. Study types were primarily clinical observation studies (59%) and genetic studies (14%). The most common characteristics/criteria sought by researchers were: specific ASD diagnosis, age, gender, medical history, IQ, scores on autism instruments, and medication history. 20,442 subjects have joined IAN, including 7,512 children with ASD (82.6% males), since its April 2007 launch. Data provided by families include those identified as key to subject recruitment selection. Only 15% of affected children have ever been part of an ASD research study before. Researchers wishing to recruit subjects through IAN specify their study eligibility criteria. IAN then identifies and contacts potential participants. The subject recruitment service became fully functional in August 2007. Fifty subject recruitment applications have been initiated, with half complete. Over 5,000 recruitment emails have been received by IAN participants. A broad range of studies from doctoral dissertations to multi-centre studies and drug trials are using IAN for subject recruitment. 55% of studies are non-commercially funded, 23% are commercially funded, and the remainder have no external funding.

Conclusions: A web based national registry can rapidly evolve and contribute to the efficiency of autism research.

See more of: Services Posters 1
See more of: Poster Presentations