What are we targeting when we treat autism spectrum disorder? A systematic review of 406 clinical trials.
Autism research uses 327 different rulers in 406 trials, so insist on shared core outcomes before you start or approve a study.
01Research in Context
What this study did
The team read every autism intervention trial they could find. They pulled 406 studies published through 2020.
They listed every single outcome measure each paper used. Then they counted how often each tool showed up.
What they found
The count hit 327 different outcome tools. About 7 in 10 of those tools appeared in only one study.
Because everyone measures differently, we can’t line the studies up to see what really works.
How this fits with other research
Tromans et al. (2018) looked at the same pile of trials first. They warned that most trials are tiny. Umberto’s team shows the yardsticks are tiny, too.
Lord et al. (2005) already begged for common measures. Fifteen years later, the problem is bigger, not smaller.
Cummings et al. (2024) pick up where Umberto stops. They say we now need tools that autistic people themselves can report, not just researcher checklists.
Why it matters
If you design, review, or fund autism studies, demand a core outcome set. Pick one social measure, one communication measure, and one quality-of-life measure everyone will use. Until we agree, every new trial just adds another lonely yardstick to the pile.
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02At a glance
03Original abstract
The number of trials aimed at evaluating treatments for autism spectrum disorder has been increasing progressively. However, it is not clear which outcome measures should be used to assess their efficacy, especially for treatments which target core symptoms. The present review aimed to provide a comprehensive overview regarding the outcome measures used in clinical trials for people with autism spectrum disorder. We systematically searched the Web of KnowledgeSM database between 1980 and 2016 to identify published controlled trials investigating the efficacy of interventions in autism spectrum disorder. We included 406 trials in the final database, from which a total of 327 outcome measures were identified. Only seven scales were used in more than 5% of the studies, among which only three measured core symptoms (Autism Diagnostic Observation Schedule, Childhood Autism Rating Scale, and Social Responsiveness Scale). Of note, 69% of the tools were used in the literature only once. Our systematic review has shown that the evaluation of efficacy in intervention trials for autism spectrum disorder relies on heterogeneous and often non-specific tools for this condition. The fragmentation of tools may significantly hamper the comparisons between studies and thus the discovery of effective treatments for autism spectrum disorder. Greater consensus regarding the choice of these measures should be reached.
Autism : the international journal of research and practice, 2020 · doi:10.1177/1362361319854641