Each part of the Register is guided, managed and governed by a variety of people to ensure that it remains relevant to all concerned.
People with MS are at the core of everything we do.
The UK MS Register has been approved the South West Central Bristol National Research Ethics Service: 16/SW/0194
We are an NIHR Portfolio study: 10416
Researchers who apply to work with the MS Register complete a series of application forms and these are reviewed by the Information Governance Review Panel (IGRP).
This panel is made up of senior clinicians, people with MS, academics and a representative from the funder. The panel ensure that the requests they have a relevant and interesting scientific question. Next they check that they have an ethical permission from a recognised agency. They also take a position on how the question is likely to be received amongst the Register audience. Please refer to the Research pages on this site for more details. Researchers must then complete a safe and ethical researchers training course to ensure that they safeguard and respect the data on the MS Register analysis platform.
The purpose of the clinical advisory group is to manage the clinical aspects of the MS Register, its largely composed of senior clinical staff from NHS Trusts across the United Kingdom. They advise on what clinical aspects to capture from the NHS and how best to integrate data into clinical practice.
The clinical lead of the UK MS Register is Dr Richard Nicholas from Imperial College London who ensures that we ask the right questions and that our focus is on the correct areas of research to ensure that we are a research and clinically relevant tool.
The Register Management Board is concerned with the overall strategic direction and performance of the MS Register. It is composed of People with MS, Senior staff from the MS Society, Consultant Neurologists, senior academics from across the UK and Senior staff from the Register.
The Register is powered by the UK Secure e-Research Platform (UKSeRP), developed by the Health Informatics Group at Swansea University and funded by the Medical Research Council.
UKSeRP is a high powered data management and sharing technology: infinitely scalable to suit a range of use cases including imaging, genomics and analysis of free text. It benefits from carefully designed Information Governance to ensure person-based data with high privacy risk is managed to the highest standards, and is ISO 27001 certified.
The Register, like an increasing number of large scaled research programmes, now uses UKSeRP to provide controlled data access and High Performance Computing to approved researchers. Data for researchers is always anonymised and access to this can be federated by the researcher responsible.
The MS Register Feedback group is an online group of participants who help test new features, ideas, questionnaires and provide feedback to the team.
There is an option to feedback ideas, suggestions or complaints to the MS Register team at any point using our contact form, or by emailing firstname.lastname@example.org. Every year the MS Register asks all participants a short questionnaire asking for feedback and ideas and engagement groups are held when possible with patients from clinical sites in conjunction with hospital staff.