UCLH Epilepsy Surgery Database
Research type
Research Database
IRAS ID
305408
Contact name
John Duncan
Contact email
Research summary
UCLH Epilepsy Surgery Database (EpilSurgDB)
REC name
South Central - Oxford C Research Ethics Committee
REC reference
22/SC/0016
Date of REC Opinion
15 Mar 2022
REC opinion
Further Information Favourable Opinion
Data collection arrangements
The Database comprises summaries of medical history and results of tests: MRI brain scans, electrical recordings of brain rhythms, tests of memory and language and blood test results. This information is extracted from medical records and stored within a secure UCL Hospitals shared drive, with access strictly limited. Any data copied from the secure database will be anonymised or, where pseudonymised, the key will remain within the UCL Hospitals computer network so that individual patients cannot be identified.
The Data Manager, who has an honorary UCL Hospitals contract and undergoes yearly data protection training, is responsible for data collection. This is primarily from the hospital’s electronic healthcare system, Epic, and data already obtained from patients is input in the Database. This is complemented by Questionnaires sent to discharged individuals and their GP and / or local care team, if appropriate
Research programme
Adults with refractory focal epilepsy who undergo evaluation for neurosurgery at National Hospital for Neurology and Neurosurgery, part of UCL Hospitals, to stop or reduce the number of seizures that they have, with the aim of improving their quality of life. The community comprises those who undergo evaluation and proceed directly to epilepsy surgery and those who undergo evaluation but do not proceed to surgery. This also includes those for whom the initial evaluation proves inconclusive and who need to have the invasive procedure, intracranial recordings (ICEEG), to determine whether surgery is viable or not and then either proceed to surgery or do not proceed. Individuals for whom surgery is not viable may be offered the palliative treatment, vagal nerve stimulation (VNS). It is important that we are able to provide this community and their treating health care professionals with realistic outcomes of the operations that they are considering, so that they can make an informed decision as to how to proceed, in discussion with the multidisciplinary team and their families.
Research database title
UCLH Epilepsy Surgery Database (EpilSurgDB)
Establishment organisation
UCLH NHS Foundation Trust
Establishment organisation address
250 Euston Road
London
NW1 2PG