Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 636 days ago
Documentation
Associated Media:
Description:
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.
Coverage
Spatial
Spatial Coverage:
United Kingdom, Wales
Temporal
Start Date:
01 January 1998
End Date:
19 December 2017
Frequency:
Biannual
Distribution Release Date:
12 November 2019
Provenance
Source:
EPR; Electronic survey; Free text NLP
Purpose:
Research cohort; Administrative; Disease registry
Collection Situation:
Primary care - Clinic, Secondary care - In-patients, Other, Patient report
outcome
Access and Governance
Usage
Condition of Access:
Project-specific restrictions
Condition of Use:
Project-specific restrictions
Resource Creator:
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.
2023;5:fcad199. Middleton RM, et al. Validating the portal population of the
United Kingdom Multiple Sclerosis Register. Multiple Sclerosis and Related
Disorders 2018;24:3-10. 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. 2012;12(1):73.
Access
Access Rights:
Access Service:
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.
Jurisdictions:
GB
Data Controller:
Population Data Science at Swansea University Medical School
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.
Data Processor:
SAIL Databank
Format and Standards
Languages:
en
Formats:
SQL database table
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Persons
30000
Count
17 March 2025