The day to day team is based in the Data Science department 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 team are able to draw upon expertise and support from the wider health Informatics team.
The Register is made up of a multi-disciplinary team led by Professor David Ford.
Professor David Ford
David is Director of the Administrative Data Research Centre (ADRC) Wales, an £8million investment by the Economic and Social Research Council (ESRC) as part of its Big Data initiative and is Deputy Director of The Farr Institute funded by a consortium of top UK research funders led by the Medical Research Council (MRC).
David is the lead of the SAIL Databank, an internationally recognised data linkage resource formed from a wide variety of routinely collected data from across 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.
Rod is the Project Manager and System Architect of the UK MS Register and has been involved with the project since its beginning. In addition to the MS Register he has been involved with working on the ALSPAC project to bring general practice information in from multiple practices across the country for a from birth cohort. He is also involved with teaching in the MSc in Health Informatics, delivered within the Data Science department. Rod’s background is from the NHS working as both a senior informatics manager in Critical Care and Theatres for several clinical systems, including neonatal prescribing. Rod was responsible for trust wide multi-million pound informatics investments in Critical Care, endoscopy and ultrasound. Additionally, having been a critical care nurse himself can bring a different perspective to projects.
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, their views and needs heard and their feedback sought. 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. 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.
Chris will be covering Katie’s maternity leave as Communications Officer until mid-October 2019. Chris joins the MS Register from the charity sector, where he’s held community engagement type roles with Cancer Research UK, Marie Curie and Wales Air Ambulance over the last 10 years. Chris will be managing the communications output for the Register including newsletters, social media and email enquiries. He will be your main point of contact until Katie’s return.
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 is involved with the MS Register to provide 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.
Dylan Griffiths, Steven Harris and other developers from the wider team are often called in to assist especially when there are larger projects such as the building of the new version. They work hard to keep the technology going and ensuring that the data is safe.
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.
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.