What do we collect from these sources?

People with MS data

Any person who is aged 18 or over, has a confirmed diagnosis of MS and lives in the UK can join the Register. Whether the person has their own computer, tablet or smartphone or has a friend or relative who is willing to help, they can join the online part of the Register.

Participants that take part in the online study are asked to complete a series of questionnaires every six months. The following questionnaires are available for them to answer:

  • Demographics
  • Onset and Diagnosis information and dates
  • Education, Employment and Care details
  • ‘Core’ PROMs - Hospital Anxiety and Depression Score (HADS), EQ5D, MSIS29v2, FSS
  • Ad Hoc PROMs - Medication, EDSS, Comorbidity, Symptoms, Barthel
  • Guest Questionnaires

Clinical site data

Participants that sign up to the online study and are treated at one of the NHS clinical sites that we work with can also consent to have their medical records securely linked to the Register and their questionnaires.

The data items collected as part of the MS Register minimum data sheet (MDS) have been decided by the MS Register Clinical Advisory Group as the most essential information that should be collected in MS treatment centers in the UK.

Minimum data set
  • Demographics
  • EDSS Score
  • Onset Data
  • MS Type at diagnosis
  • Confirmation of diagnosis
Expanded data set
  • DMT data dosage, route, frequency, side effects
  • Disease course
  • Diagnosis method
  • Walking assessment

Other linkable data sources/Routinely collected Data (Wales)

There are a variety of other data that data from PwMS and Clinically collected data can be linked to - within our current operating model Welsh Participants are routinely linked to General Practice and Patient Episode Database for Wales (PEDW) data stored by our partners, the SAIL Databank (Secure Anonymised Information Linkage).

The SAIL Databank is a world-class system for the robust secure storage and use of anonymised person-based data for research to improve health, well-being and services. Backed and endorsed by the Government, the SAIL Databank receives core funding from the Welsh Government’s Health and Care Research Wales.

Other linkable data can be added to this source, we are currently exploring the addition of MRI and the HES datasets.

Current list of linkable data:

  • Inpatient and Outpatients (Patient Episode Database for Wales (PEDW))
  • GP Systems
  • ONS Information
  • Cancer Registries
  • Cohort Studies
  • Other Disease Registers

Stats at a Glance

Here is a glimpse at some of the data that the MS Register holds from the website and also the clinically collected database.

Anyone wishing to use this data is welcome to, but please contact the MS Register team first.