The day-to-day team is based in the Data Science Building in Swansea University Medical School. Swansea University Medical School has a strong reputation in Health Informatics, and has a track record of over 20 years on information system research and development, information standards, and public health analyses.
The Register is made up of a multi-disciplinary team led by Rod Middleton.
Associate Professor Rod Middleton
Rod is the Principal Investigator and System Architect of the UK MS Register and has been involved with the project since its beginning.
Rod has extensive experience of data linkage, ICT Systems, health informatics and direct healthcare provision. He has managed the delivery and grants for the UK MS Register, integration with the Avon Longitudinal Study for Parents and Children from Birth Cohort and the implementation and purchase of multi-million-pound clinical systems in NHS Critical Care settings across Wales. He has worked extensively with managers, health care professionals of all levels and patients, the third sector, and researchers, for the last 15 years and has an excellent track record in the delivery of complex systems and research. He directly manages the dedicated internal research team and supports a wide network of external researchers and collaborators from across the UK and Europe in the delivery of their research.
Professor David Ford
David is a co-applicant and previous PI of the UK MS Regsiter. He is also the lead of the SAIL Databank, an internationally recognised data linkage resource formed from a wide variety of routinely collected data from across Wales. He is also the Deputy Director of the Health Data Research UK (HDR UK) site for Wales and Northern Ireland and Co-Director of Administrative Data Research Wales.
David is Fellow of the Royal Society for the Encouragement of the Arts, Manufactures and Commerce (FRSA) and past Chairman and current Director of MediWales, a membership organisation representing the medical technology sector of Wales. David has received research grants and consultancy contracts valuing over £40million.
From early on in the project it was very clear that there needed to be someone to represent the participants on the study and make sure that their questions were answered, their opinions sought, and their feedback gathered. Katie communicates with people with MS, Researchers, clinical NHS teams and other stakeholders to ensure that the register is relevant, open and transparent and continues to serve everyone’s needs whilst making an impact. Katie has a background of community engagement, education, event management and marketing.
Dr Jeff Rodgers
Jeff works with large scale linked data, developing linked datasets for analysis that answer important research questions. He specialises in the use of SQL and other query languages, in database systems such as DB2, and record linkage methods. He works closely with researchers, supporting the translation of research questions into forms that can be run against the MS Register and other health informatics repositories. He aims to acquire other appropriate datasets for use and incorporate them into the MS Register, ensuring that all relevant Information Governance and consent requirements are met and adhered to. He also carries out support and assistance to other researcher's analysts to enable them to carry out research using the data linkage facilities available to the MS Register.
Jeff undertakes complex and structured data analysis, dealing appropriately with potentially duplicated records, missing and erroneous data and documentation of the methodology, through report writing, and contributions to the preparation of publications.
Elaine is a Research Analyst who will be working with the team to query the Register’s datasets for research questions, as well as ensuring the accuracy and completeness of the data and documenting methodologies and procedures. Prior to working on the Register, Elaine worked with infectious disease data at the University of Oxford, managing and standardising diverse datasets in Ebola and Malaria. Elaine has a BA and an MPhil from the University of Cambridge.
James is a research analyst who joined in 2020 who assists the team in the pre-processing, preparation, linkage and visualisation of the register's survey results in addition to analysing Welsh patient records via the Secure Anonymized Information Linkage (SAIL) Databank. Before his work on the Register, James worked on combining and pre-processing various medical compound and protein databases, which led to the development of a comprehensive knowledgebase that link compound chemistry to biological activity and mechanisms of disease. James' skills are in R and SQL, in addition to some familiarity with other programming languages such as Java. James has a BSc and MSc from the University of Wales Trinity Saint David, and a PhD in Medical and Healthcare Studies from Swansea University.
Sarah is a research analyst who joined the team in 2022. She assists the team in answering important research questions using SQL and R to prepare, link and analyse data from the participant portal and clinical sites. Prior to working on the Register, Sarah worked on clinical trials and academic studies at Imperial College NHS hospital sites in London and has recently completed an MSc in Neuroimaging for Clinical and Cognitive Neuroscience at the University of Manchester.
Leah is the Administrator on the project. Prior to this position she worked in the police service for fifteen years. Leah’s role in the police required her to manage multiple, complex workloads, and coordinate policing teams under the constraints of strict budgetary controls. In addition, Leah also has experience as a Purchasing Administrator for a music publisher with offices in the UK and USA. There her role involved day to day operational management and the creation and distribution of sales reports to stakeholders on both sides of the pond. Leah was responsible for new product releases and coordinating both domestic and international exhibitions.
Dr Richard Nicholas
Richard is a Neurologist from Imperial College London. He is part of the MS Research Team carrying our academic and commercial studies. He is also involved in the biology of MS and novel imaging techniques.
He provides Clinical Leadership to the project, acting as an ambassador throughout the clinical community and wider population. He works with partner sites to ensure that the data collected is relevant and of the best quality possible and is working to increase dissemination of the data through publication to drive insights into MS within the wider academic community.
Mike is the Lead User Experience/Interface Designer for the MS Register and wider team. He has designed the new version of the website and all associated marketing materials and publications. His experience in design and developing web tools is often called upon in the design and layout of the questionnaires and communications with people with MS and other stakeholders.
The UK MS Register team is based within Population Data Science, Swansea University Medical School and is lucky to be able to call on a wealth of expertise from analysts, developers, researchers and technology experts, including Professor Kerina Jones, Stephanie Lee, and Simon Thompson.
The neurologists involved with the Register, as well as being specialists in the anatomy, functions, and organic disorders of nerves and the nervous system, and in MS specifically are primarily concerned with patient care, research and consent for the MS Register.
Associate Professor Nikos Evangelou, Dr Owen Pearson, Dr Gavin McDonnell, Dr Klaus Schmierer, Dr David Rog, Dr Richard Nicholas, Rod Middleton, Professor David Ford, Professor Kerina Jones and Simon Thompson.
The nurses who work in each of our partner sites have a big role to play as they communicate the project’s aims and ideals with people with MS.