How family perspectives could improve clinical trials

Whether a potential treatment for autism works in a clinical trial depends on how the trial measures success. There are several ways to gauge a person’s response to a treatment — from interviews with parents to questionnaires filled out by teachers, clinicians and caregivers. It is unclear which of these ‘outcome measures’ reflects improvements that are important to people with autism.

To help identify the best measures, Thomas Willgoss and his colleagues asked people on the spectrum and their families to describe their autism features and the impact of those features. The researchers plan to use the insights from these interviews to evaluate how well existing outcome measures reflect the features that are important to people with autism. They also hope to identify challenges, such as sensory sensitivities and difficulties with daily living, that trials should track and potentially treat. They published their findings in September in Autism Research.

We asked Willgoss, research scientist at F. Hoffmann-La Roche, a pharmaceutical company headquartered in Switzerland, about the usefulness of this ‘patient-centered’ approach.

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12th December 2017