Today, on International Epilepsy Day, patient group MedCan Support, scientific body Drug Science and tech-platform Alta Flora announce the launch of an innovative study into prescribed cannabis oil for children with epilepsy.
MedCan Support and Drug Science are proud to announce 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 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.
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.
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 sever lack of funding.
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.
The Alta Flora platform will allow researchers to generate high-quality, longitudinal evidence on epilepsy, whilst making it easy and accessible for families with chronically ill children to participate through a dedicated app.
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 Eva Research Platform is a patient-centric research platform that enables innovative data collection through a mobile app. Alta Flora’s company mission is to make healthcare research more open and inclusive; and designers believe that research into 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, 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.”
The study launches today and will run for at least 12 months.