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The Lithuanian multiple sclerosis registry: current framework and quality challenges.
Julija Isačenko1, Dalia Musneckienė2, Rasa Kizlaitienė3
1Department of Neurology, Lithuanian University of Health Sciences Kaunas Clinics, Kaunas, Lithuania.
Frontiers in Neurology
|March 11, 2026
Summary
The Lithuanian Multiple Sclerosis (MS) Registry tracks patient data since 2013. While covering over 70% of patients on disease-modifying therapy, challenges in enrollment and data quality persist.
Area of Science:
- Neurology
- Public Health
- Data Science
Background:
- The Lithuanian Multiple Sclerosis (MS) Registry was established in 2013 by the Lithuanian Neurologists' Association.
- It serves as a surveillance system for adult individuals diagnosed with MS in Lithuania.
- Data is collected from all national centers providing MS treatment.
Purpose of the Study:
- To present the current structure of the Lithuanian MS Registry.
- To detail its data collection methods, coverage, and limitations.
- To assess the registry's utility for clinical practice and research.
Main Methods:
- Data extracted from February 1, 2013, to January 1, 2024.
- Inclusion criteria: adult MS patients receiving care in Lithuania with informed consent.
- Data points include demographics, diagnostics, clinical status (EDSS), treatment, and relapses.
Main Results:
- The registry contains 2,923 patients, with 1,651 (47.3%) in active follow-up.
- It covers 69.5%-74.6% of patients receiving disease-modifying therapy.
- Data includes demographics, diagnostic results, EDSS, treatment, and relapse information.
Conclusions:
- The registry has operated for over a decade, collecting valuable MS patient data.
- Challenges remain in patient enrollment and ensuring high-quality data collection.
- Strengthening validation processes is crucial for enhancing registry reliability and utility.
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