Real-world Practices and Challenges of Radiologically Isolated Syndrome: Results of a Cross-Sector Survey by the DACH MS Guidelines Group

ObjectiveTo evaluate real-world Radiologically isolated syndrome (RIS) management practices across Germany, Austria, and Switzerland and identify key gaps for future guideline development.MethodsBetween 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.ResultsAmong 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.ConclusionReal-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.