People with epilepsy face many challenges throughout their journey. Getting the right diagnosis, finding a treatment that controls seizures, and dealing with potential side-effects all interrupt the lives of 600,000 people in the UK living with epilepsy.
Research is the key to addressing these problems. Much of the work we fund provides hope for tomorrow through lab-based science and unravels the complexities of the condition, which will lead to important things like new treatments and diagnostic techniques in the future.
But we also fund a great deal of clinical research, which is making a difference to people’s lives now. And it’s clear that research for tomorrow and for today hold equal importance for people affected by epilepsy. When we asked members of our Shape Network, overall, they said that funding should be equally split between clinical and lab-based research. Help for today and hope for tomorrow.
On the Research Blog this month, we’re focusing on clinical research in a hospital setting and highlighting the work of four researchers funded by Epilepsy Research UK, thanks to your donations.
Professor Sameer Zuberi and colleagues have developed a smartphone app called vCreateNeuro, which allows people to securely share videos of seizures with their doctors to enable a quicker and more accurate diagnosis. On the Research Blog next week, Amanda and John tell us the story of their son Archer, who was diagnosed with epilepsy when he was just eight weeks old. Thanks to Sameer’s research, Archer was able to start treatment quickly at a crucial stage in his development.
For some people, their epilepsy may have been caused by a fault in a gene, and it’s the job of clinical geneticists like Dr Kate Baker to identify the gene responsible. One question she is often asked by families is whether a successful genetic diagnosis will make a difference to their treatment. Kate finds it frustrating that often, the answer is not clear, however her team are starting to find an answer in relation to one particular gene. Find out more about Kate’s work on the Research Blog later in the month.
SUDEP (Sudden Unexpected Death in Epilepsy) is when a person with epilepsy dies suddenly without any obvious cause of death. Tragically, this accounts for around half of the 21 epilepsy-related deaths that occur every week. With funding from Epilepsy Research UK, Dr Rhys Thomas is working to provide evidence-based information to people about SUDEP, including factors which might increase a person’s risk. In his blog later this month, Rhys will explain how people affected by epilepsy are contributing to make this information as useful and sensitive as possible, and helping people to have conversations about SUDEP with their loved ones.
Although the practice of conducting hospital appointments over a phone or video call has been around for a while, the COVID-19 pandemic made these ‘tele-consultations’ mainstream. But can they completely replace face-to-face consultations in hospitals? Professor Markus Reuber received funding from Epilepsy Research UK to investigate how effective these remote appointments are, for both people with epilepsy and their doctors. Later this month, Markus will explain why this is still important even as healthcare services ‘return to normal’ after the pandemic.
These are just a few examples of how, thanks to your donations, we’re funding clinical research projects which have the potential to offer help for today, as well as research that offers hope for tomorrow. As Archer’s parents Amanda and John put it: “Research is vital to develop new medications and increase understanding of the condition. With more research, our son and many others could continue to live their lives as uninterrupted as possible by their epilepsy.”
Kate, Rhys, and Markus spoke at our recent ‘Shape Network Live’ conference – a meeting for Shape Network members to find out more about the different types of research into epilepsy, including lab research, clinical research and big data research. The conference was recorded and we are delighted to make the screening of the clinical research session available later this month. Sign up to our E:Bulletin to find out how you can watch it.
If you’re interested in attending a future Shape Network event, why not join the network.