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Updated: Jun 21, 2026
10:46
A Method of Trigonometric Modelling of Seasonal Variation Demonstrated with Multiple Sclerosis Relapse Data
Published on: December 9, 2015
10.7K
Introducing a core dataset for real-world data in multiple sclerosis registries and cohorts: Recommendations from a
Tina Parciak1,2,3, Lotte Geys1,2,3, Anne Helme4
1University MS Center (UMSC), Hasselt-Pelt, Belgium.
Multiple Sclerosis (Houndmills, Basingstoke, England)
|December 23, 2023
Summary
A standardized core dataset for multiple sclerosis (MS) real-world data (RWD) was developed. This dataset promotes data harmonization across MS registries and research initiatives, improving collaboration.
Area of Science:
- Neurology
- Data Science
- Epidemiology
Background:
- No standardized core data elements existed for multiple sclerosis (MS) healthcare and research as of September 2022.
- This lack of standardization limited data harmonization across observational data sources and hindered scientific collaboration.
Purpose of the Study:
- To establish and gain consensus on a core dataset for real-world data (RWD) in multiple sclerosis (MS).
- This dataset is intended for use in observational registries and cohorts.
Main Methods:
- A three-phase process was employed, including a landscaping exercise.
- Dedicated discussions were held within a global multi-stakeholder task force of 20 MS and RWD experts.
Main Results:
- A core dataset for MS comprising 44 variables across eight categories was defined.
- The dataset, including demographics, comorbidities, disease history, status, relapses, MRI, and treatment data, was published as a data dictionary.
Conclusions:
- The MS Data Alliance Core Dataset provides guidance for new registries and enhances harmonization across initiatives.
- The efficient, expert-driven process successfully defined a concise and effective core dataset for MS RWD.
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