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

Fredrik Sandesjö; Peter Alping; Katharina Fink; Ronny Wickström; Fredrik Piehl; Thomas Frisell; Kyla A McKay

doi:10.1177/20552173251314118

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

Mult Scler J Exp Transl Clin. 2025 Feb 9;11(1):20552173251314118. doi: 10.1177/20552173251314118. eCollection 2025 Jan-Mar.

Authors

Fredrik Sandesjö^{1

2}, Peter Alping³, Katharina Fink^{4

5}, Ronny Wickström^{1

2}, Fredrik Piehl^{4

5}, Thomas Frisell³, Kyla A McKay^{4

5}

Affiliations

¹ Neuropediatric Unit, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm, Sweden.
² Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
³ Division of Clinical Epidemiology, Department of Medicine, Solna, Karolinska Institutet, Stockholm, Sweden.
⁴ Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden.
⁵ Center for Molecular Medicine, Karolinska Institutet, Stockholm, Sweden.

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.

Keywords: MS; PoMS; children; evidence; observational; real world; register; therapy; treatment.