FutureNeuro, the SFI Research Centre for Chronic and Rare Neurological Diseases, based at RCSI (Royal College of Surgeons Ireland), has partnered with global biopharmaceutical company, UCB, to unlock the power of healthcare data to inform improvements in clinical care of people with epilepsy.
Based on aggregated clinical data analytics, the project will provide insights into disease progression and responses to treatment, which can be used to determine risk factors and inform treatment planning for individuals living with epilepsy.
Clinicians, researchers and data scientists will collaborate to complete a feasibility study to demonstrate the potential of the Irish National Epilepsy eHealth System (Electronic Patient Record (EPR) and Electronic Patient Portal) as a tool to support better clinical analytics. Ultimately, the eHealth project has the potential to promote a model of proactive and personalised care which can prevent disease deterioration and tailor treatment to individual’s needs.
Epilepsy affects more than 60 million people worldwide[i], making it one of the most common neurological conditions. Characterised by the occurrence of recurrent unprovoked seizures, epilepsy can also have significant psychosocial consequences. The goal of treatment is a reduction or elimination of seizures to enable individuals to lead as productive a life as possible, without significant side-effects of therapy. Many factors such as age, diet, family history, comorbidities can contribute to how a person with epilepsy responds to treatment.
Mary Fitzsimons, Funded Investigator with FutureNeuro at RCSI and Director of the Epilepsy Lighthouse Project said:
“By analysing aggregated clinical data for a population of people with epilepsy, we can help explain the factors that predict response to treatment. This can inform the development of algorithms that can enhance evidence-based clinical decisions – meaning better treatment options for individual patients.”
Hiromasa Mori, UCB Head of Neurology Patient Technology, Europe said:
“We are excited to start our partnership with FutureNeuro to develop a deeper understanding of the disease progression in epilepsy and how we can predict patient’s responses to treatment. We are hopeful that the partnership will enable us to identify risk factors and inform treatment decisions for individuals living with epilepsy and will identify any potential gaps in the existing data that we have which could provide further insights into this complex neurological condition.”
Director of Research and Innovation at RCSI, Professor Ray Stallings, said:
“The partnership between FutureNeuro and UCB will harness clinical data to further enable healthcare professionals to provide the most effective treatment for people with epilepsy. I look forward to the outcomes of this collaboration and the potential benefits it will bring to future epilepsy care.”
Professor Mark Ferguson, Director General of Science Foundation Ireland and Chief Scientific Adviser to the Government of Ireland, welcomed the collaboration, saying:
“SFI Research Centres are unique and dynamic in the Irish ecosystem, a key element of which is their collaboration with industry to address challenges through impactful research. FutureNeuro is dedicated to improving the lives of epilepsy patients through greater understanding of the disease and its progression, as well as more effective treatment and better outcomes. This new partnership between FutureNeuro and UCB is hugely positive, promising much potential for clinical treatment of this life-altering illness. I welcome its announcement and look forward to the positive insights it will generate.”
FutureNeuro, which is funded by Science Foundation Ireland, aims to deliver advances in understanding disease initiation and progress. With this understanding, and through industry partnerships, new technologies and solutions for the treatment, diagnosis and monitoring of chronic and rare neurological diseases will be developed.
In 2015, the HSE and eHealth Ireland designated the National Epilepsy eHealth programme as a lighthouse for the country to help build a national understanding of the quality, safety and efficiency benefits of electronic health records and to illustrate the economic opportunity for Ireland in terms of becoming a global leader in eHealth technology development and use.
[i] Epilepsy Society. Facts and Statistics. Available at: https://www.epilepsysociety.org.uk/facts-and-statistics#.XGardOj7TD4 [Last accessed: February 2019]