UCLH Epilepsy Surgery Database

  • Research type

    Research Database

  • IRAS ID

    305408

  • Contact name

    John Duncan

  • Contact email

    john.duncan@nhs.net

  • 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