Academic medical centres in the US are hoping to boost the low level of participation in autism studies by launching an Autism Spectrum Disorder (ASD) sub-registry within ResearchMatch, a disease-neutral volunteer registry sponsored by the National Institutes of Health.
As things stand, only 5% of the estimated 1.5 million children with an autism spectrum disorder in the US participate in clinical trials, notes the Ohio State University Center for Clinical and Translational Science, which has collaborated on the ASD sub-registry with researchers from Vanderbilt University in Nashville, Tennessee.
By contrast, paediatric cancer studies in the US have an enrolment rate of close to 90%, which has helped to advance treatments and outcomes for childhood cancers substantially over the last decade, the Center notes.
“If we could raise the autism research participation level to that of the pediatric cancer community, we think we could realise similar gains,” said Rose Hallarn, programme director for clinical trials recruitment at Ohio State University’s Center for Clinical and Translational Science (CCTS) and institutional liaison for ResearchMatch.
Working with the Vanderbilt University researchers, Hallarn’s team interviewed families of autistic children, autism advocates and researchers to come up with five additional questions that were added to the registration process for people identifying themselves (or their dependents) with ASD.
These questions help to sift out behaviours and medications that could qualify children for particular research studies, the CCTS explained.
The registry allows for a range of participation levels from volunteers: some studies involve visiting a laboratory or taking medication, others just need volunteers to complete online health-information surveys.
“We’re hopeful that the simplicity of this registry will encourage people to join,” Hallarn commented.
Located in Columbus, Ohio, the state university is also a member of the Autism Clinical Trials Network, sponsored by US-based charity Autism Speaks.