In 103 pediatric patients with drug-resistant epilepsy, 54% showed reduced seizures at one month, with sustained improvements in communication and alertness, and 55% retention at 18 months.
Pediatric neurologists, epilepsy specialists, caregivers of children with drug-resistant epilepsy
55% of patients were still taking CBD at 18 months, with off-label users showing higher retention
What the researchers found
54% of caregivers reported reduced seizure frequency at 1 month; 48% maintained improvement at 2-6 months; communication (60%), alertness (54%), and motor skills (44%) also improved; 55% retention at 18 months; off-label use had higher retention than approved indications.
Why it matters
Long-term retention data fills a critical gap in understanding whether CBD's initial benefits persist, and the finding that off-label use showed higher retention challenges restrictive prescribing practices.
The numbers in context
103 patients (mean age 11.2); 47% on-label (23 Dravet, 15 LGS, 10 TSC), 53% off-label; retention: 97% at 1 month, 90% at 2 months, 82% at 6 months, 66% at 12 months, 55% at 18 months; 62% positive overall caregiver impression at 1 month.
How the study worked
Prospective study of 103 consecutive pediatric patients starting CBD for drug-resistant epilepsy at a tertiary center (2019-2021); parental questionnaires at 1, 2, and 6 months; retention tracked at 18 months.
What this study cannot tell us
Single-center; no control group; caregiver-reported outcomes may introduce bias; dropout by 18 months means retention data may overestimate benefit in completers.
How to read the evidence
Prospective design with consecutive enrollment and long-term follow-up, though single-center and lack of control group limit causal conclusions.
When this study was published
Published 2025, enrollment 2019-2021
The bigger picture
Together with multicenter retrospective data, this prospective study strengthens the case that CBD benefits extend beyond its three approved epilepsy indications.
Questions still open
- Why did off-label patients show higher retention? Do the non-seizure improvements (communication, alertness) represent direct CBD effects or secondary benefits of seizure reduction?
Common questions
How many patients stayed on CBD long-term?
Did CBD help with anything besides seizures?
Read the original research
Assessing Real World Efficacy, Safety, and 18-Month Retention Rates of Cannabidiol in Individuals With Drug Resistant Epilepsies.
European journal of neurology, 32(9), e70304
Citation
Chemaly, Nicole; Kuchenbuch, Mathieu; Losito, Emma; Kaminska, Anna; Coste-Zeitoun, Delphine; Barcia, Giulia; Desguerre, Isabelle; Hully, Marie; Nabbout, Rima. (2025). Assessing Real World Efficacy, Safety, and 18-Month Retention Rates of Cannabidiol in Individuals With Drug Resistant Epilepsies.. European journal of neurology, 32(9), e70304. https://doi.org/10.1111/ene.70304
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