France
Caregiver experiences in Dravet syndrome clinical trials evaluated in French survey
A French cross-sectional survey investigated how caregivers perceived their children's participation in clinical trials for Dravet syndrome, including cannabidiol studies. Respondents reported generally positive experiences, motivated by treatment access and trust in clinicians, though scheduling demands and side-effect concerns presented challenges. The primary limitations of this study are its small sample size of forty-four trial participations and its reliance on retrospective self-reporting.
- Twenty caregivers surveyed had children who participated in a cannabidiol clinical trial.
- Paediatric neurologists suggested trial participation in eighty-eight percent of the cases.
- Primary motivations for joining trials included gaining access to new therapies and hope for improvement.
- Scheduling conflicts for medical appointments and fear of adverse events were key barriers to participation.
Our view
There is much here for anyone running clinical trials. That motivation came from access to new treatments and trust in the medical team, while the barriers were appointment scheduling and fear of adverse events, can be taken directly into trial design. That a neurologist proposed participation in 88 per cent of cases shows how far entry into a trial depends on the clinical relationship. When we run trials, the burden on patients and families has to be estimated at the design stage.
Sources
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