A Day in the Life of an Epilepsy Research Nurse
I am Javier Peña Ceballos1 and I am the epilepsy research nurse at King’s College Hospital2. I have a very exciting role which combines clinical and research work across paediatric and adult epilepsy research projects. My job involves the screening and recruitment of people with epilepsy (PWE) to cutting edge research studies across many NHS (National Health Service)3Trusts in South London: King’s College Hospital, Princess Royal University Hospital4, Evelina Children’s Hospital5, and St Thomas’ Hospital6.
My aim is to give patients the opportunity to take part in research studies and contribute the knowledge of epilepsy. We want to develop better treatments for people with epilepsy as well as dispel popular misconceptions about taking part in research. On the other hand, by conducting high quality research we aim to reduce the stigma around having a diagnosis of epilepsy.
To perform this role, I take advantage of the professional background I have gained from working in clinical epilepsy from 2017. I pursue to connect the clinical environment with the research world and break down the gap that exists between clinicians, researchers, and the most important part of this equation: patients and their families. I spend my time with the epilepsy consultants at each hospital where we carefully check which patients might be suitable for specific studies. This is a crucial step to ensure we collect high quality data and that the results at the end of the study are reliable. I then attend the epilepsy clinic with the consultants to provide information and talk to patients about the opportunity to take part in research. Research can sometimes seem overly complicated, so it’s my job to assist patients understand what we are asking them to do, answer questions, and if they are happy to take part, we ask them to sign a consent form. Only after patients give their consent can we collect data about them. This important process is called [Informed Consent][7]7.
For example, one of the studies I am involved in is called [REGAIN, this stands for Rolandic Epilepsy International Genomewide Association Study][8]8. [Rolandic Epilepsy is also known as RE or Benign Epilepsy with Centrotemporal Spikes (BECTS)][9]9. [Approximately 25% of children with epilepsy have RE][10]10. Children with RE quite often have other symptoms that affect their speech, attention, reading ability or coordination. We know that RE has a genetic basis and [we recently discovered the genetic cause of the EEG pattern seen in RE ][1]10. The goal of REGAIN is to now find the genetic basis for susceptibility to seizures and the associated symptoms above.
Two weeks ago, I had the pleasure of inviting Luke Stevens to take part in the REGAIN study. Luke had a diagnosis of Rolandic Epilepsy as a child and is now involved in promoting research into childhood epilepsy. Luke attended a research appointment at the National Institute for Health Research/Welcome Trust Clinical Research Facility at King’s College Hospital11.
Luke is the taller person on the right!
During his visit, I we talked about the details of the study, why the research is important and what will happen to Luke. By taking art in the study we asked patients to provide some clinical background about his epilepsy and a blood sample.
After we had completed the Informed Consent7 process, we went through the research forms together. Here I asked Luke about his medical history including information about his epilepsy and seizures. The information Luke provided is entered into a secure form we call a Case Report Form or “CRF"12. We only use a unique ID number on the form, so Luke received his own study number so his data can be kept confidential and no one outside of the research team can identify him.
Every research visit with a patient is a valuable moment during the research process because we learn a lot about our patients and their experiences of being diagnoses with epilepsy. It was a pleasure meeting Luke and hearing about his experiences. We will store Luke’s information securely at King’s College with all the other samples we have collected from the many families who have kindly taken part in the study; these will be analysed together at a later stage of the project. We hope to recruit up to 1000 patients with RE from across the UK and the world. Thank you, Luke for taking part!
Javier Peña Ceballos
L: linkedin.com/in/javier-pe | W: castlestudy.org.uk/the-research-team/javier-pena-ceballos
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