In the 2018-20 award, the BRAIN Unit received funding to develop an Electronic Patient Record (EPR) system supporting clinical care and deep patient phenotyping in Multiple Sclerosis (Cardiff and Vale and Aneurin Bevan), Parkinson’s Disease (Abertawe Bro-Morgannwg) and Epilepsy (Cardiff and Vale).
The system is deployed via a secure internet-facing server behind the NHS firewall, allowing researchers to securely collaborate and contribute patient-level datasets. Towards the end of the award, a new multi-disciplinary module for the epilepsy surgery programme (Cardiff and Vale) was deployed. The PatientCare database is now well integrated and has cross-disciplinary use, improving the care of patients.
Developing the EPR system
We now wish to expand on this platform to develop research-ready cohorts, where detailed diagnostic and clinical phenotype data is maintained alongside patients’ consent to be approached for research, and tissue biologicals, most commonly serum and plasma for genetic and other disease biomarkers are collected and stored.
A programme is already in place for Multiple Sclerosis for patients in South Wales led by Professor Neil Robertson, utilising a clinical database ‘PatientCare’ and the Wales Neuroscience Tissue bank. We are developing a similar pipeline for patients with epilepsy, the PatientCare database is already being used to capture diagnostic and treatment data as part of routine clinical care.
Additional funding from the BRAIN Unit will go towards extending this work to a formal research proposal with NHS Ethics and R&D approval for tissue and para-clinical (namely brain scan (MRI) and electroencephalograph (EEG)) data collection with patient consent for storage and onward research, for patients with epilepsy attending specialist clinical in Cardiff and Vale and Cwm Taf health boards.
This supports one of the main objectives and strengths of BRAIN, which is the close bidirectional link between academic research and routine NHS clinical care, giving access to patients with neurological conditions attending outpatient clinics into clinical research and clinical trials.
Expanding the team
To execute this research, we welcomed Valerie Anderson to the BRAIN Unit team, to support an epilepsy clinical database and sample collections setup, initially working on the protocol, ethics and R&D approvals.
This will be of benefit to other researchers in epilepsy, who will have access to the data and samples collected, create research-ready cohorts for clinical trials and studies as they develop, that would be available for any BRAIN Unit investigators and outside collaborators. And it will open opportunities for collaborations with other research initiatives in the UK and internationally.
Valerie previously established a similar project in Multiple Sclerosis. Her experience and knowledge from doing this will allow us to proceed at pace in getting things set up for epilepsy, and then to work further on the running of the project once set up.
Once established, as envisaged within the 12 month funding period recruitment, consent, sample collection and data collation would continue through standard clinical encounters. Data would be available for research and follow-on funding would be sought for both infrastructure and project-specific support.