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Research Participation Survey
The Research Participation Survey was designed as an informal operational survey to help the Department of Medical Informatics/IAN Research Project understand what motivates people to participate in autism research, their research interests, and their research experiences.
We are now requesting IRB approval of this operational QA/QI project in which we have already collected data because we wish to publish the results. Data was collected anonymously.
The Department of Medical Informatics launched the Research Participation Survey on August 1, 2014 and ran through August 11, 2014. The survey was distributed anonymously via a variety of channels, including IAN’s Facebook page, IAN Community website, and IAN e-newsletter. The survey was anonymous, no PII was gathered, responses will be aggregated, and no personal information will be associated with the survey results.
We developed two surveys: one for adults with ASD and one for parents of children with ASD. We replicated the surveys for SSC@IAN families so that we could obtain separate results. There were 223 SSC parents, 944 non-SSC/general parents, 5 SSC adults, and 153 general adults with ASD who took the survey. The majority found out about the survey through the IAN e-newsletter, though some found out about it in other ways.
Preliminary analysis of the data suggests that the survey results may be of high interest to the autism research community; thus, we would like to publish the results of this operational survey in a research forum (e.g., the International Meeting for Autism Research (IMFAR) to benefit the autism research community. As such, we are now requesting IRB approval.
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