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Validation of the Swedish Multiple Sclerosis registry for pediatric-onset multiple sclerosis
Fredrik Sandesjö1,2, Peter Alping3, Katharina Fink4,5
1Neuropediatric Unit, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm, Sweden.
Insights
Real-world data on pediatric multiple sclerosis (MS) treatments are crucial due to limited trials. The Swedish MS registry offers valid disease-modifying therapy (DMT) use data for pediatric MS patients, despite some missing information.
Area of Science:
- Neurology
- Clinical Research
- Data Science
Background:
- Pediatric-onset multiple sclerosis (PoMS) lacks controlled trials for disease-modifying therapies (DMTs).
- Off-label use of adult-approved DMTs is common in PoMS.
- Real-world evidence is essential for guiding clinical practice in PoMS.
Purpose of the Study:
- To validate the accuracy of the Swedish Multiple Sclerosis registry for PoMS data.
- To assess the reliability of registry data for tracking DMT use in PoMS.
Main Methods:
- Comparison of Swedish Multiple Sclerosis registry data against medical records for 122 PoMS patients.
- Assessment of data completeness and accuracy for various clinical variables.
Main Results:
- Registry data were generally confirmed with ≥89% accuracy.
- Missing data exceeded 30% for rituximab infusions, MRI, and relapses.
- The registry provides valid real-world data on DMT use in PoMS.
Conclusions:
- The Swedish Multiple Sclerosis registry is a valuable resource for real-world data on PoMS.
- Awareness of data limitations, particularly missing information, is necessary for accurate interpretation.
- Registry data can inform clinical decisions for DMT use in pediatric multiple sclerosis.
Abstract:
Few controlled trials of disease-modifying therapies (DMTs) have been conducted on the pediatric-onset multiple sclerosis (PoMS) population, leading to extensive off-label use of therapies approved only for adults. This highlights the need for real-world evidence to guide clinical practice. Clinical registries can offer high-quality data, but limitations such as missing and erroneous information must be considered. This validation study compared Swedish Multiple Sclerosis registry data from 122 PoMS patients to medical records. Generally (≥89%), data were confirmed. However, missing data exceeded 30% for rituximab infusions, magnetic resonance imaging, and relapses. Overall, the registry provides valid, real-world data on DMT use in PoMS.
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