New digital observational study underway in UK to generate real-world evidence for childhood epilepsy research

The pioneering study, a collaboration between MedCan Support, Drug Science and Alta Flora, will help researchers learn more about the role of medicinal cannabis in treating children with rare types of epilepsy.

A new study has been announced in the UK to coincide with International Epilepsy Day (13^th February 2023). Researchers will analyze real-world data (RWD) submitted through a mobile app to learn about the symptoms, quality of life and health economic data from children with epilepsy taking prescription cannabis products. The goal of the study, an alliance between UK scientific body, Drug Science, and patient advocacy organisation, Medcan Support, is to generate real-world evidence to provide researchers with insights on the impact of these treatments and to guide the next generation of medicinal products.

The study is being made possible by the health technology company Alta Flora, using the Eva Research Platform, a patient-centric research platform that captures patient-generated health data through a mobile app. All RWD gathered from the study, which will take place over 12 months, will be analyzed in depth by researchers at Drug Science.

Approximately 35,000 children and young people in the UK experience epilepsy that cannot be treated with conventional medicine. Often these are rare or even unique types of epilepsy and are associated with a reduced quality of life. Research into new treatments has been hampered by lack of funding and stigma surrounding the use of alternative cannabis-based medications.

MedCan Support is a non-profit community interest hub who support more than 600 families of children with epilepsy with education, advocacy, research and support on the use of medical cannabis. Hannah Deacon, Co-Founder of MedCan Support commented: “This is a ground-breaking study, and one MedCan is proud to have been involved in… 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.”

Formed in 2010, Drug Science is the UK’s leading independent, non-profit scientific body focused on developing rational policies on drugs. David Badcock, CEO of Drug Science, noted: “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.” Badcock continued “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.”