The potential of cannabis medicines to treat symptoms of epilepsy, especially for children who are resistant to other available drugs, has been one of the driving forces behind the liberalisation of medical cannabis laws in the UK. Yet since medical cannabis was made legal in the UK in 2018, very few NHS prescriptions have been issued for the medicine.
On International Epilepsy Day, MedCan Support and Drug Science announced the launch of a pioneering digital study to learn more about the symptoms of rare childhood epilepsies and the next generation of medications to treat them. The study launched February 13, 2023 and will run for at least 12 months.
The study will be run using technology company Alta Flora’s Eva Research Platform, and the in-depth data gathered will then be analysed by Drug Science researchers. In the UK there are over 35,000 children with epilepsy that cannot be controlled with established medications, many as a result of rare or even unique conditions. Yet research into new, more effective treatments has been slow, in part due to a severe lack of funding. New technologies and platforms like the ones being used will hopefully allow scientists to gather high-quality, real-world data on rare conditions and from hard-to-reach groups.
Cannabis derived medications represent a potentially huge breakthrough, with studies in the United States, Canada, Australia, and Israel indicating it could have an impact on even in the most drug-resistant epilepsies. However, the stigma and legal complexity around Cannabis as a recreational drug has so far prevented much meaningful research being conducted in the UK.
In the past, a significant challenge for those looking to pioneer new epilepsy medications has been the requirement for Randomised Controlled Trials (RCTs). This is an incredibly costly process, and often not realistic when dealing with rare conditions, such as those that can cause drug-resistant epilepsies. However, the COVID-19 pandemic required researchers to adapt to different ways of conducting clinical trials and prompted international regulators to acknowledge that inclusivity in healthcare research needs to be improved.
The research platform being used is a patient-centric research platform that enables data collection through a mobile app. New methods of data collection and innovative solutions like this one are key to helping medical professionals understand medical cannabis.
Hannah Deacon, co-founder of MedCan Support and mother of Alfie, who has complex epilepsy, said:
“This is a ground-breaking study, and one MedCan are proud to have been involved in. I know only too well the importance of new and better treatments for your child when they are suffering severe seizures. Finding ways to speed up research without losing quality is a vital part of the fight to make sure safe and effective medicines are made available to vulnerable children as quickly as possible.”
David Badcock, CEO of Drug Science, said:
“Drug Science has been at the forefront of the research effort into cannabis in the UK for several years, and this observational study will build on the work that our research teams have done in childhood epilepsy since cannabis was reintroduced to the British pharmacopoeia in 2018. We are pleased to work on this pioneering project with MedCan Support and Alta Flora and hope that the longitudinal Real World Evidence that we are now able to collect will advance the case for wide access to these transformational medicines.”
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