In an open-label observational trial at Primary Children’s hospital, 25 children and teens with treatment-resistant epilepsy who apply to be part of a new drug trial will, will receive Epidiolex, a liquid, purified form of cannabidiol (CBD), a non-psychoactive chemical in marijuana.

The primary goal will be to test the tolerability of Epidiolex and the optimal dose of CBD, a chemical shown to have powerful anti-seizure properties in children who have tried whole-plant marijuana extracts.

Parent activists who pushed for Charlee’s Law — which frees Utahns with epilepsy to import whole-plant CBD extracts from states where medical marijuana is legal — have long hoped Primary Children’s would study Epidiolex.

But the timing of the study poses a challenge for families who are on a waiting list for a highly sought CBD oil made by Colorado Springs growers at the Realm of Caring Foundation.

Those families will be eligible to apply for a Utah “hemp supplement” registration card starting July 8. But taking the oil could exclude them from participating in Primary Children’s study, which has an unknown start date.

“It’s a decision point for families, to do this study or try a whole plant extract,” acknowledged Clark.

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