The UK MS Register is a ‘real world’ research register designed to increase understanding of living with MS in the UK. We are a National Institute for Health Research (NIHR) portfolio study. To be eligible patients must have a Neurologist confirmed multiple sclerosis diagnosis, be over the age of 18, and be a resident of the UK.
We are open to new NHS Trusts and with more sites on board we will be able gather more clinical data about MS in your area. Together with all our other sites you can support the Register in carrying out research into treatments, lifestyle, epidemiology, cognition, burden of disease and many other essential areas related to clinical care and people living with MS in the UK.
If you choose to join us and become a Data Collection Centre (DCC), your patients can consent for their MS related medical records to be linked to the UK MS Register. This will enable the joining of existing information that they provide in the form of patient reported outcome measures to the Register’s online ‘portal’. This linked data (the website/Portal and the sharing of clinical data) creates a rich source of information used by researchers to help make sense of MS.
The UK MS Register is a ‘real world’ research register designed to increase understanding of living with MS in the UK. We are a National Institute for Health Research (NIHR) portfolio study. To be eligible patients must have a McDonald confirmed multiple sclerosis diagnosis (2017), be over the age of 18, and be a resident of the UK.
We are open to new NHS Trusts and with more sites on board we will be able gather more clinical data about MS in your area. Together with all our other sites you can support the Register in carrying out research into treatments, lifestyle, epidemiology, cognition, burden of disease and many other essential areas related to clinical care and people living with MS in the UK.
If you choose to become a partner site, your patients can consent for their MS related medical records to be linked to the UK MS Register joining any information that they provide in the form of patient reported outcome measures to the Register’s online ‘portal.’ This linked data creates a rich source of information used by researchers to help make sense of MS.
A database which MS researchers can consult to answer important questions
A research ready community of people with MS
A community available to be informed about clinical trails
A useful tool for patients to keep a log of their MS and communicate with their NHS site
Who are we already working with?
The UK MS Register are currently working with more than 50 NHS Trusts across the UK.
+19,000
consented patients
+50
clinical sites
More than 1 million
PROMs over 15 years
Why become a Data Collection Centre (DCC)
Be part of an approved NIHR portfolio study (10416).
Straightforward eligibility criteria.
Minimal time requirement for consent and data entry to take part.
Academic recognition for site PI participation.
Multiple modes of patient consent.
Easy-to-use eCRF for data capture or ways to work with existing clinical systems.
Research opportunities for early career researchers, including the NIHR API scheme.
Monthly personalised site specific reports.
Access to YOUR patient’s reported outcome measures (subject to patient approval).
Support available from UK MS Register team via email, telephone or monthly Clinical Drop-in sessions on Teams.
What’s Involved?
Our friendly team will assess how suitable your department is for joining the MS Register with a simple questionnaire.
We will then give you all the materials needed for your Research and Development department to decide whether or not to be involved.
If you decide to take part, we will provide all the documents needed and provide training.
We can supply consent packs for in-person or postal consent and can also offer e-consent links. We have a selection of promotional merchandise available for your own events which we can send out to you on request.
Anyone aged 18 and over with a confirmed diagnosis of MS can be approached by a member of the clinical team (or by someone with GCP training).
Once the patient has consented to have their medical records linked, a minimum data set form will need to be completed and can be entered into an electronic Case Return Form (eCRF). We also require regular patient follow-up, via the eCRF or by uploading an annual review letter.
The UK MS Register recognises that data capture can be challenging for hard pressed NHS staff. While the Register has a simple eCRF available for use, we are system agnostic, meaning that data can be securely extracted from many existing record systems in use (for example iMed, MS Excel, and others).
After consent is given, patients are encouraged to log onto the UK MS Register website and complete questionnaires.
The Register team hold regular online drop-in meetings for any queries or concerns and are also available to provide support by email.