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

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Tác giả: Peter Alping, Katharina Fink, Thomas Frisell, Kyla A McKay, Fredrik Piehl, Fredrik Sandesjö, Ronny Wickström

Ngôn ngữ: eng

Ký hiệu phân loại: 616.834 *Multiple sclerosis

Thông tin xuất bản: United States : Multiple sclerosis journal - experimental, translational and clinical , 2025

Mô tả vật lý:

Bộ sưu tập: NCBI

ID: 51811

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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