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Outcomes for Children with Treatment-Resistant Epilepsy from the UK Medical Cannabis Registry

Author: Doctor Simon Erridge | Published on 26/01/2023

Epilepsy is a relatively common condition that is characterised by repeated unprovoked seizures. The condition affects the brain, causing bursts of electrical activity – known as seizures. While anyone may experience a single seizure, an epilepsy diagnosis may be made if clinicians believe that the patient is at an increased risk of experiencing further seizures. Epilepsy usually starts in children or people over the age of 60; however, it can develop at any age. It is estimated that around 65 million people are affected by epilepsy, globally.

Current Treatment Options for Epilepsy

Epilepsy can cause serious disruption and is often associated with reduced quality of life and significant social impacts, including educational attendance, stigmatisation, discrimination, and social isolation. A number of anti-seizure medications are now available; however, around a third of patients are still unable to achieve seizure control. Some patients’ epilepsy is non-responsive to conventional treatment (known as treatment-resistant epilepsy) and few patients are currently suitable for surgery – the most successful treatment option in these cases.

There is a clear need for the development of novel treatment options to reduce seizure frequency and severity in patients who may otherwise struggle to successfully control their seizures. 

Medical Cannabis and Epilepsy

In November 2018, the UK officially rescheduled cannabis, allowing for its medicinal use in a number of conditions. One of the most prominent topics during the campaign that led to this landmark event was the potential of medical cannabis as a treatment for epilepsy. Treatment-Resistant Epilepsy is now one of only a handful of conditions for which the National Institute of Health and Care Excellence (NICE) recommends a trial of Epidyolex (a cannabidiol isolate oil) when other options have proven ineffective for children with Lennox-Gastaut and Dravet Syndromes. 

In addition to Epidyolex there have been much speculation about the use of unlicensed medical cannabis products. However, there i a paucity of high-quality evidence of the safety and efficacy of these products. To help address this issue, Sapphire Medical Clinics established the UK Medical Cannabis Registry to record the outcome measures of patients receiving CBMPs for the treatment of various conditions, including treatment-resistant epilepsy.

Data Collection for the UK Medical Cannabis Registry

The UK Medical Cannabis Registry, which has been managed by Sapphire Medical Clinics since 2019, is the first UK patient registry to collect data regarding CBMP prescription formulations, patient demographics, patient-reported outcome measures (PROMs) and adverse events (AEs). The current analysis assessed data from paediatric (aged under 18) patients with TRE who have received a medical cannabis prescription. 

https://www.sapphireclinics.com/outcomes-for-children-with-treatment-resistant-epilepsy-from-the-uk-medical-cannabis-registry/