Why do we need brain banks in epilepsy research?
Studying donated brain tissue from biobanks helps researchers better understand what causes neurological conditions and how they affect the brain. By closely examining cells and tissue structures and comparing them with those from people without epilepsy, scientists can uncover important differences. This research is often combined with clinical studies, brain scans, and EEG recordings to build a fuller picture of epilepsy.
Studies of brain alterations, including at the single neuronal level, have provided important insights into the causes and consequences of seizures on brain pathology. Understanding disease mechanisms is one of the first steps to developing new treatments and prevention strategies. In recent years, The Epilepsy Society Brain and Tissue Bank (ESBTB) tissue collection has been able to provide samples for researchers in the UK and abroad investigating SUDEP, Dravet syndrome, tumour-related epilepsy and causes of memory impairment in epilepsy among other important clinical questions.
Although epilepsy is a common neurological condition, there are many different causes. Indeed, some types of devastating epilepsy are quite rare. We acknowledge that in the UK, further development and networking is much needed to ‘join up’ tissue resources around different centres and improve accessibility of tissue samples, particularly for rare and understudied conditions. With the exciting modern technologies now available to explore single cell molecular and genetic alterations, human tissue samples in epilepsy are likely to take on an even more key role in this research area in the future.
The ESBTB was set up in 2013, at the UCL Queen Square Institute of Neurology in the Department of Neuropathology. The tissue bank has ethical approval and has been supported by the Epilepsy Society and previously the Katy Baggott foundation. This has spearheaded the first tissue bank in the UK dedicated to the study of epilepsy. Its mission is to support research projects in the UK and abroad, while providing a route for donors wishing to contribute tissue samples. This collection continues to grow, and supports varied ethically approved epilepsy research projects through the delivery of tissue samples in various formats donated to us either following a surgical procedure or at post-mortem.
The directors for the tissue bank are Dr Maria Thom, Consultant Neuropathologist, and Professor Sanjay Sisodiya from the Department of Clinical and Experimental Epilepsy at UCL. Hanaa El Hachami is the brain bank manager. As well as a tissue bank, our linked NHS neuropathology department provides a full, accredited neuropathological diagnostic service for epilepsy-related pathology and second opinions.
Tissue donors and why this is so vital.
The success of any tissue bank is of course dependent on the good will of epilepsy patients who agree to donate tissue samples. Our tissue bank collects consented samples from patients who have undergone surgical treatment, using any surplus tissues. We also have a donor registry for people who have epilepsy who wish to donate brain tissue following death. We of course are equally interested to obtain brain material from patients who have never had epilepsy as control tissues to compare to epilepsy!
We receive many enquiries from people wishing to join our donor register, so we’ve developed a new electronic tool to make the process simpler. Our brain bank now offers e-consent, enabling donors to register easily by scanning a QR code. The process has been given ethical approval and all consent forms will be stored on the Data Safe Haven which is a highly secure method of data storage. This comprehensive data collection tool will consolidate all of the clinical, postmortem, neuropathology report, epilepsy data for each patient. E-consent will have a positive impact in brain donation as it is a more sustainable practice and reduces the risk of data breaches. Visit the website for more information.
The brain bank team would like to thank all those who have chosen to donate brain tissue after death. Your generous decision makes our research possible and has lasting impact.
Please contact the brain bank team at [email protected] with any questions or if you would like more information on brain donation.
