Real-world practices and challenges of radiologically isolated syndrome: results of a cross-sector survey by the DACH MS guidelines group

Held F, Bayas A, Christe K, Dettmers C, Domurath B, Ebert J, Faßhauer E, Flachenecker P, Gärtner J, Hasanbasic D, Heesen C, Hegen H, Henze T, Huppke P, Kana V, Khalil M, Kirschner-Hermanns R, Korn T, Kümpfel T, Lamprecht S, Meier U, Meyer zu Horste G, Mäurer M, Oertel FC, Pot C, Pröbstel AK, Rostásy K, Salmen A, Scheiderbauer J, Schmidt M, Stark E, Trebst C, Trollmann R, Warnke C, Wattjes MP, Wiestler B, Wildemann B, Zimmermann U, Gehring K, Berthele A, Hemmer B (2026)

Publication Type: Journal article

Publication year: 2026

Journal

Book Volume: 17

Article Number: 1822692

DOI: 10.3389/fneur.2026.1822692

Abstract

Objective – To evaluate real-world Radiologically isolated syndrome (RIS) management practices across Germany, Austria, and Switzerland and identify key gaps for future guideline development. Methods – Between October 1 and October 16, 2024, neurologists across university hospitals, teaching hospitals, municipal clinics, and private practices in Germany, Austria, and Switzerland (DACH) participated in an anonymous online survey on RIS diagnosis, treatment, and monitoring practices. Results – Among 127 physicians from diverse care settings, RIS management showed both marked heterogeneity and notable convergence. While the diagnostic work-up was relatively uniform (>85% performed comprehensive magnetic resonance imaging (MRI) and cerebrospinal fluid (CSF) analysis, as well as evoked potentials), awareness and implementation of the 2023 RIS criteria varied substantially (34% consistent use, 42% partial implementation, 16% non-adoption, and 8% unaware). Treatment practices showed the greatest heterogeneity: although 54% considered therapy initiation and clinicians agreed on treatment triggers (high lesion burden, new MRI activity, inflammatory CSF), 69% treated less than 25% of their RIS cases. Off-label treatment strategies, medication choices, and escalation approaches varied widely across settings, with 72% lacking standardized algorithms. Structural barriers were consistent across all countries and care levels, with reimbursement challenges (61%), patient communication difficulties (42%), and limited access to specialists outside university centers identified as key obstacles. Recent treatment trials increased therapeutic confidence, yet clinicians emphasized the urgent need for national recommendations to harmonize diagnostic workflows, treatment pathways, and reimbursement structures. Conclusion – Real-world RIS care in the DACH region is characterized by substantial practice heterogeneity, coexisting with shared clinical approaches, which reflects the absence of formal guidelines and approved therapies. While the 2024 McDonald criteria now enable immunotherapy for asymptomatic individuals at high-risk for MS, clinical uncertainty persists regarding risk stratification, treatment decisions, and communication frameworks, challenges applicable to both RIS and preclinical MS. These findings reveal critical unmet needs and demonstrate the urgent necessity for harmonized DACH-wide recommendations addressing diagnostic standards, risk-adapted treatment pathways, patient communication, reimbursement integration, and cross-sector collaboration.

Involved external institutions

Technische Universität München (TUM) Germany (DE) Universität Augsburg Germany (DE) Hochschule Furtwangen Germany (DE) Kliniken Schmieder Germany (DE) Kliniken Beelitz GmbH Germany (DE) Kliniken Valens Switzerland (CH) Deutsche Multiple Sklerose Gesellschaft, Bundesverband e. V. Germany (DE) Universitätsklinikum Göttingen Germany (DE) Medizinische Hochschule Brandenburg "Theodor Fontane" / Brandenburg Medical School "Theodor Fontane" Germany (DE) Universitätsklinikum Hamburg-Eppendorf (UKE) Germany (DE) Medizinische Universität Innsbruck Austria (AT) Universitätsklinikum Jena Germany (DE) Universitätsspital Zürich (USZ) Switzerland (CH) Medizinische Universität Graz Austria (AT) Universitätsklinikum Bonn Germany (DE) Klinikum der Universität München (LMU Klinikum) Germany (DE) St. Augustinus NeuroCentrum MVZ gGmbH Germany (DE) Universitätsklinikum Münster Germany (DE) Klinikum Würzburg Mitte Germany (DE) Charité - Universitätsmedizin Berlin Germany (DE) Lausanne University Hospital / Centre hospitalier universitaire vaudois (CHUV) Switzerland (CH) Vestische Kinder- und Jugendklinik Datteln Germany (DE) Katholisches Klinikum Bochum (St. Josef- und St. Elisabeth-Hospital gGmbH) Germany (DE) Sana Kliniken AG Germany (DE) Medizinische Hochschule Hannover (MHH) / Hannover Medical School Germany (DE) Universitätsklinikum Gießen und Marburg (UKGM) Germany (DE) Universitätsklinikum Heidelberg Germany (DE) Universitätsmedizin Greifswald / Universitätsklinikum Greifswald Germany (DE)

How to cite

APA:

Held, F., Bayas, A., Christe, K., Dettmers, C., Domurath, B., Ebert, J.,... Hemmer, B. (2026). Real-world practices and challenges of radiologically isolated syndrome: results of a cross-sector survey by the DACH MS guidelines group. Frontiers in Neurology, 17. https://doi.org/10.3389/fneur.2026.1822692

MLA:

Held, Friederike, et al. "Real-world practices and challenges of radiologically isolated syndrome: results of a cross-sector survey by the DACH MS guidelines group." Frontiers in Neurology 17 (2026).

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