# Validation of the Swedish Multiple Sclerosis registry for pediatric-onset multiple sclerosis

## TL;DR

The study validates a Swedish registry for pediatric-onset multiple sclerosis, finding it mostly accurate but with notable missing data.

## Contribution

The study provides real-world validation of a clinical registry for pediatric-onset multiple sclerosis in Sweden.

## Key findings

- Registry data for PoMS patients were confirmed in ≥89% of cases when compared to medical records.
- Missing data exceeded 30% for rituximab infusions, MRI scans, and relapse information.
- The registry is deemed valid for tracking disease-modifying therapy use in PoMS.

## 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.