Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 646 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:
United Kingdom, Wales
Typical Age Range:
18-150
Follow Up:
Continuous
Pathway:
--
Provenance
Origin
Purposes:
- Research cohort
- Administrative
- Disease registry
Sources:
- EPR
- Electronic survey
- Free text NLP
Collection Situations:
- Primary care - Clinic
- Secondary care - In-patients
- Other
- Patient report outcome
Temporal
Accrual Periodicity:
Biannual
Distribution Release Date:
12 November 2019
Start Date:
01 January 1998
End Date:
19 December 2017
Time Lag:
Other
Accessibility
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.
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.
Delivery Lead Time:
2-6 months
Jurisdictions:
GB
Data Controller:
Population Data Science at Swansea University Medical School
Data Processor:
SAIL Databank
Usage
Data Use Limitations:
Project-specific restrictions
Data Use Requirements:
Project-specific restrictions
Resource Creators:
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.
Format and Standards
Vocabulary Encoding Schemes:
LOCAL
Conforms To:
LOCAL
Languages:
en
Formats:
SQL database table
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Persons
30000
Count
17 March 2025