A new collaborative digital study will explore the symptoms of rare childhood epilepsies and how medicinal cannabis can help them.
The real-world data study, launching on International Epilepsy Day (Monday 13 February) is a collaboration between UK scientific body, Drug Science, and patient advocacy organisation, Medcan Support.
The study will utilise the technology firm Alta Flora’s Eva Research Platform, to collect high-quality, longitudinal data on the effects of prescribed cannabis oil for children with epilepsy, submitted by families through a mobile app.
It will run for 12 months and the data gathered will then be analysed by researchers at Drug Science.
In the UK there are over 35,000 children with treatment-resistant epilepsy that cannot be controlled with traditional medications and many are the 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.
Cannabis-based medications have shown promise in studies from the US, Canada, Australia, and Israel, for the treatment of even the most drug-resistant of epilepsies, but research in the UK is lagging behind due the stigma and legal complexity around cannabis as a recreational drug.
David Badcock, CEO of Drug Science, commented: “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.”
A new era of research
In the past, a significant challenge for those looking to pioneer new epilepsy medications has been the requirement for randomised controlled trials (RCTs), which are expensive and often not realistic for those with these rare conditions.
The Covid-19 pandemic has meant researchers have had to adapt to different ways of conducting clinical trials and has prompted international regulators to acknowledge the need for inclusivity in healthcare research.
New technologies and platforms, such as Alta Flora’s, are increasingly allowing scientists to gather high-quality, real-world data on rare conditions and from hard-to-reach groups.
The company’s mission is to make healthcare research more open and inclusive and its designers believe that childhood epilepsy epitomises the type of research the platform was designed to make possible.
Hannah Deacon, co-founder of MedCan Support and mother of Alfie Dingley, who has complex epilepsy, added: “This is a groundbreaking study, and one MedCan is 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.”
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