Patient group MedCan Family Foundation and scientific body Drug Science are proud to announce the launch of a next-generation, digital observational study to learn more about the signs and symptoms of rare childhood epilepsy conditions.
The study will be run using health technology company Alta Flora’s Eva Research Platform, with data submitted by caregivers and parents of children with epilepsy through the platform’s dedicated app, for analysis by Drug Science researchers.
There are over 35,000 children with refractory epilepsy in the UK,[1] defined as epilepsy where a patient’s seizures fail to come under control with treatment.
Cannabis was made illegal in the UK in 1971 under the Misuse of Drugs Act.[2] This change in legislation also prevented a great deal of meaningful research into the drug and its possible benefits for patients.
Yet over the last few years, there have been many prominent examples of the drugs being beneficial for children with refractory epilepsy, helping to control seizures and improving the quality of life for both patients and their families. These case studies have been reported in the United States[3], Canada[4], Australia[5], Israel[6] and other countries and have spurred renewed interest from the global research community into the effects of cannabis on childhood epilepsy.
Alongside these developments, healthcare research has seen numerous developments, including a growing interest in genomics and the incorporation of data from new technologies (such as wearable devices, similar to widely-available fitness trackers) into medical studies. Furthermore, the COVID-19 pandemic has 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[7].
The Eva Research Platform fits neatly into these developments. It 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 facilitate.
Epilepsy is a disease which impacts over 600,000 people in the UK, but research investment has been lacking, with only £12.8m of government funding invested (vs. an annual cost to the NHS of £1.5B). There has been a paucity of research into new treatment options and quality of life improvements. The Alta Flora platform will allow researchers to generate high-quality, longitudinal evidence on epilepsy.
[7] How will COVID-19 transform global health post-pandemic? Defining research and investment opportunities and priorities
