[Core data set for real world data in multiple sclerosis: customization for latin america from a global task force...

Area of Science:

• Neurology
• Epidemiology
• Data Science

Context:

• Multiple Sclerosis (MS) research requires standardized data collection for robust analysis.
• Existing global data sets need regional adaptation to suit local needs and infrastructure.
• Latin America has developing MS registries and cohorts requiring a unified data approach.

Purpose:

• To adapt the global Multiple Sclerosis Data Alliance core data set for Latin America.
• To facilitate the implementation of a standardized data collection protocol across regional MS registries.
• To enhance harmonization and reduce heterogeneity in real-world data for MS in Latin America.

Summary:

• A working group adapted a global MS core data set through translation, regional variable incorporation, and Delphi methodology.
• The adaptation involved 25 Latin American professionals from November 2022 to July 2023.
• Consensus was reached on a 45-variable, 9-category core data set (version 2023).

Impact:

• The adapted core data set will streamline real-world data collection for MS in Latin America.
• Implementation will foster collaboration and data sharing among regional MS registries and cohorts.
• This harmonization effort is expected to accelerate MS research and clinical insights within the region.