MedCan Family Foundation, Drug Science and Alta Flora announce the launch of a next-generation digital observational study, for children with epilepsy
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.
About the study
Technology Platform from Alta Flora Used to Study Childhood Epilepsy
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.
MedCan Family Foundation Promotes Epilepsy Study and Recruits 50 Families
Charity group MedCan Family Foundation aims to recruit 50 families through their networks and proceed with eligibility screening. The study is promoted along with the MedCan Family Foundation manifesto
Refractory Epilepsy in the UK.
There are over 35,000 children with refractory epilepsy in the UK, 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. This change in legislation also prevented a great deal of meaningful research into the drug and its possible benefits for patients.
Recent Case Studies and Advancements in Healthcare Research
Recent Success Stories Ignite Renewed Interest in Plant Medicines as Potential Treatments
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, Canada, Australia, Israel and other countries and have spurred renewed interest from the global research community into the effects of cannabis on childhood epilepsy.
Advancements in Healthcare Research: Genomics, Wearable Devices, and Adaptation to COVID-19.
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.
Patient-Centric Research with Alta Flora's Data Collection Platform
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.
Mobile App-Based Data Collection
Researchers will gather data via validated clinical questionnaires delivered through a parent or caregivers mobile app on:
✔ Seizure frequency and intensity
✔ Prescribed and administered dosages of the drug
✔ Physiological and behavioural effects of the drug
✔ Financial costs
The data which will be collected through this observational study is in accordance with the NICE criteria for acceptance as high-quality RWE, and is expected to inform future clinical trial design and data collection methodology.
The study was launched on 13th February 2023 and will run for at least 12 months.
Globalising rare disease studies is crucial: families in Canada and Germany have already asked to join the study
We are working with early partners who need a Real World Data collection platform for their projects. If this is you, please get in touch with us.
We encourage you to become an early partner as we are still actively developing our platform and thus open to new ideas and features that may support your project and better patient engagement.