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United Kingdom Multiple Sclerosis Register (UKMS)

Population Size

30,000

People

Population Size statistic card

Years

1998 - 2017

Years statistic card

Associated BioSamples

None/not available

Associated BioSamples statistic card

Geographic coverage

United Kingdom

Wales

Geographic coverage statistic card

Lead time

2-6 months

Lead time statistic card

Summary

The UK MS Register was launched in 2011 by the team at Population Data Science in Swansea University Medical School and is funded by the MS Society.

Documentation

The UK MS Register was launched in 2011 by the team at Population Data Science in Swansea University Medical School and is funded by the MS Society. The fundamental concept is to capture more real world data about living with MS in the United Kingdom. The Register does this in two ways:

1. People with MS recording information about their MS directly to us through our website via simple questionnaires

2. Our collaboration with a growing number of hospitals across the UK to link consented website participants acirc euro; trade; medical records with their questionnaire responses

This provides an extremely rich bank of data and huge potential for research.

Dataset type

Health and disease

Dataset population size

30000

Associated media

https://saildatabank.com/about-us/https://popdatasci.swan.ac.uk/centres-of-excellence/sail/https://ukmsregister.org/

Keywords

Observations

Observed Node

Disambiguating Description

Measured Value

Measured Property

Observation Date

Persons

30000

Count

17 Mar 2025

Provenance

Purpose of dataset collection

Research cohort, Administrative, Disease registry

Source of data extraction

EPR, Electronic survey, Free text NLP

Collection source setting

Primary care - Clinic, Secondary care - In-patients, Other, Patient report outcome

Patient pathway description

--

Image contrast

Not stated

Biological sample availability

None/not available

Structural Metadata

Details

Publishing frequency

Biannual

Version

11.0.0

Modified

08/10/2024

Distribution release date

12/11/2019

Citation Requirements

The UKMSR anticipates collaboration with researchers. Authors using data from UKMSR must acknowledge using "This study makes use of anonymised data held by the United Kingdom Multiple Sclerosis Register funded by the MS Society and based on technology established by the SAIL Databank. We would like to acknowledge all the data providers who make anonymised data available for research." and should cite:

Lerede A, et al. Patient-reported outcomes in multiple sclerosis: a prospective registry cohort study. Brain Communications. 20235:fcad199.

Middleton RM, et al. Validating the portal population of the United Kingdom Multiple Sclerosis Register. Multiple Sclerosis and Related Disorders 201824:3-10. doi:10.1016/j.msard.2018.05.015

Ford DV, et al. The feasibility of collecting information from people with Multiple Sclerosis for the UK MS Register via a web portal: characterising a cohort of people with MS. BMC Medical Informatics and Decision Making. 201212(1):73.

Coverage

Start date

01/01/1998

End date

19/12/2017

Time lag

Other

Geographic coverage

United Kingdom, Wales

Minimum age range

18

Maximum age range

150

Follow-up

Continuous

Accessibility

Language

en

Alignment with standardised data models

LOCAL

Controlled vocabulary

LOCAL

Format

SQL database table

Data Access Request

Dataset pipeline status

Available

Access rights

https://saildatabank.com/data/apply-to-work-with-the-data/
https://www.ukmsregister.org/Research/WorkingWithUs

Time to dataset access

2-6 months

Access request cost

Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process,

and special case technological requirements. Also subject to approval by UKMS Register costs.

Access method category

TRE/SDE

Access service description

The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.

Also subject to approval by UKMS Register SSC.

Jurisdiction

GB

Data use limitation

Project-specific restrictions

Data use requirements

Project-specific restrictions

Data Controller

Population Data Science at Swansea University Medical School

Data Processor

SAIL Databank

Dataset Types: Health and disease

Dataset Sub-types: Rare diseases

Collection Sources: Primary care - Clinic, Secondary care - In-patients, Other, Patient report outcome