CBD Showed Mixed Results for Adults with Dravet Syndrome | Research

The takeaway

In 18 adults with genetically confirmed Dravet syndrome, CBD added to existing medications produced meaningful seizure reduction in about 18% of patients, but adverse effects were common and led to discontinuation in some.

Epileptologists, adult Dravet syndrome patients, CBD prescribers

17.6% of adult Dravet patients achieved meaningful seizure reduction with CBD

What the researchers found

Among 17 evaluable adults with Dravet syndrome treated with CBD (up to 20 mg/kg), 3 (17.6%) achieved greater than 30% reduction in convulsive seizures (range 87.5-100%), while adverse effects occurred in all patients, with transaminitis in 52.9% and behavioral side effects leading to discontinuation in 16.7%.

Why it matters

Most CBD epilepsy research focuses on children. This study provides rare data on CBD effectiveness in adults with Dravet syndrome, where outcomes appear more modest and side effects more common than in pediatric studies.

The numbers in context

18 adults (7 female); median age 27.5 years; median follow-up 176 days; 17.6% had >30% seizure reduction; transaminitis in 52.9%; behavioral AEs led to discontinuation in 16.7%; 7/18 stopped for lack of effect; 8/18 continue treatment; 41.2% showed physician-rated improvement.

How the study worked

Retrospective real-world study of 18 adults with genetically confirmed Dravet syndrome who received CBD through the GW Pharma early access programme at two UK neurology centers, with median follow-up of 176 days.

What this study cannot tell us

Small sample size; no control group; retrospective design; early access programme may attract patients with more severe disease; median follow-up under 6 months.

How to read the evidence

Small retrospective real-world study without controls, providing preliminary evidence on CBD in adult Dravet syndrome.

When this study was published

Data from GW Pharma early access programme at two UK centers.

The bigger picture

The gap between the modest seizure reduction rates and the higher rates of perceived improvement by physicians and families suggests CBD may offer quality-of-life benefits beyond seizure frequency alone, though careful monitoring is essential.

Questions still open

Why do adults with Dravet syndrome appear to respond less robustly to CBD than children? Would longer treatment duration improve response rates?

Common questions

Does CBD work for adults with Dravet syndrome?

In this small study, about 18% of adults achieved meaningful seizure reduction, and some became seizure-free. However, all patients experienced side effects, and nearly 40% discontinued treatment.

What side effects occurred?

The most common was elevated liver enzymes (transaminitis) in 52.9%. Behavioral side effects led to discontinuation in 16.7% of patients, including one who had been seizure-free.

Read the original research

Two-center experience of cannabidiol use in adults with Dravet syndrome.

Seizure, 91, 5-8

View on PubMed ↗Publisher’s paper ↗

Citation

Silvennoinen, Katri; Ritter, Laura Mantoan; Nashef, Lina; Hudgell, Kirsty; Balestrini, Simona; Sisodiya, Sanjay M; Sidhu, Meneka K. (2021). Two-center experience of cannabidiol use in adults with Dravet syndrome.. Seizure, 91, 5-8. https://doi.org/10.1016/j.seizure.2021.05.014