In March 2023, based on our track record of research funding excellence and capacity building the research environment, we received permission from the government to become the Epilepsy Research Institute UK.
The term ‘Institute’ is controlled by the government, and only available to those with a track record of success in their field and who operate nationally at the highest levels. Becoming the Epilepsy Research Institute UK will provide us with the unique capability to convene and coordinate the research community.
The Institute will unite everyone in a common purpose to radically advance epilepsy research.
Before becoming the Epilepsy Research Institute UK, the charity Epilepsy Research UK had a distinguished history of funding scientific and clinical research, to benefit people living with epilepsy and associated conditions.
The first charity dedicated to funding epilepsy research in the UK was set up by the British Epilepsy Association as a charitable trust in 1985, the British Epilepsy Research Foundation. It later became the Epilepsy Research Foundation.
By 1991, the total contribution of the Epilepsy Research Fund for epilepsy research in the UK was only around £80,000 per year, but this was roughly equivalent to the epilepsy research funded at that time by the UK Medical Research Council (Shorvon 1991). Indeed, in 1991, less than £1 per person with epilepsy was being spent, in total, on epilepsy research in the UK.
In 1992, in response to this underfunding, Kings College London set up the Institute of Epileptology under the leadership of Ted Reynolds (later to become president of the ILAE). A component of this was the fund for epilepsy research to be invested in research undertaken at Kings College London. In 2008, the Epilepsy Research Foundation and the Fund for Epilepsy were successfully merged as Epilepsy Research UK.
Epilepsy Research UK was the only national UK charity exclusively dedicated to funding research into epilepsy. We awarded up to £1.7 million per year in fellowships, PhD studentships and response-mode grants. This enabled the growth of epilepsy research centres throughout the UK.
At the time the charity became the Institute, it was funding over 40 projects, including clinical research seeking to advance the medical care and management of people living with epilepsy, and lab-based scientific research, investigating causes and methods for improving diagnosis, treatment and prevention of epilepsy.
Epilepsy Research UK played a key role in setting the research agenda, through an internationally renowned Expert Workshop programme and dissemination activities that aim to forge local and global collaborations. We also commissioned research to accelerate innovations that improve clinical practice and health policy through partnership working and advocating for further investment in research.
As members of the Association of Medical Research Charities (AMRC) Epilepsy Research UK’s grant-awarding processes met the rigorous standards AMRC membership require, ensuring it funded only the highest quality research. The Epilepsy Research Institute continues to be AMRC members and will maintain the same high standards.
Shorvon SD. The Lack of Funds for Clinical Epilepsy Research in the UK J R Coll Physicians Lond. 1991 Jan; 25(1): 31–32
Reynolds EH. The Institute of Epileptology of King’s College, University of London. Epilepsia 1995; 36(Suppl. 1):S4-S7