Dissecting definitions of disability accrual in relapsing multiple sclerosis-Have we reached standardization yet?

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Authors: Gabriel Bsteh, Stefanie L. Gala Marti, Helly Noemi Hammer, Nik Krajnc, Michael Guger, Franziska Di Pauli, Jörg Kraus, Christian Enzinger, Andrew Chan, Thomas Berger, Harald Hegen, Robert Hoepner
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Abstract

Background Distinguishing relapse-associated worsening (RAW) and progression independent of relapse activity (PIRA) has reshaped understanding of disability accumulation in relapsing multiple sclerosis (RMS). The influence of differing definitions of disability accrual on event rates and RAW/PIRA proportions remains uncertain.Methods This observational cohort study used Austrian MS Treatment Registry data (2010-2024). A custom algorithm evaluated 1440 definitional variants of disability accrual with varying confirmation duration, baseline modeling, and RAW/PIRA classification, including recently proposed "standardized" criteria.Results We included 3273 RMS patients (mean age 37.5 years; 67.8% female) with ⩾24 months follow-up, ⩾3 Expanded Disability Status Scale (EDSS) scores, and ⩾1 EDSS score per year, contributing 3525 follow-up periods. Depending on definition, disability accrual varied between 15.7% and 41.6% of follow-ups. PIRA accounted for 56.1%-86.3% of events across definitions, while up to 8.4% were ambiguously classified, mainly due to post-relapse re-baselining or relapses during the confirmation period. Even under "standardized" criteria, 144 definitional combinations remained, with event rates ranging from 19.1% to 21.7% and PIRA contribution varying widely from 59.8% to 85.8%.Conclusion PIRA predominantly drives disability accrual, yet definitional variation substantially influenced event rates and RAW/PIRA proportions. Transparent reporting and further optimization of definitions are critical for improving comparability, interpretation, and clinical relevance in MS research and care.

Fields of Study & Subjects

Multiple Sclerosis Research Studies Amyotrophic Lateral Sclerosis Research Systemic Sclerosis and Related Diseases

Publication details

Journal / source
Open Access CRIS of the University of Bern
Publication date
1 February 2026
Language
EN