CHARACTERIZING PEOPLE WITH UNTREATED MULTIPLE SCLEROSIS IN REAL-WORLD EVIDENCE: INSIGHTS FROM LITERATURE AND THE GERMAN NEUROTRANSDATA REGISTRY (2018-2024)
Author(s)
Stefan Braune, MD1, Yanic Heer, PhD2, Martin Traber, MD3, Ana Ferro, PhD4, Arnfin Bergmann, MD1, Katya Galactionova, PhD3, Carmen Berardo, PhD3.
1NeuroTransData, Neuburg, Germany, 2Rewoso, Zurich, Switzerland, 3Hoffman-La Roche, Basel, Switzerland, 4Hoffman-La Roche, London, United Kingdom.
1NeuroTransData, Neuburg, Germany, 2Rewoso, Zurich, Switzerland, 3Hoffman-La Roche, Basel, Switzerland, 4Hoffman-La Roche, London, United Kingdom.
OBJECTIVES: Despite available treatments, a substantial proportion of diagnosed people with MS (pwMS) remain untreated. We aim to understand epidemiological trends and reasons for staying untreated.
METHODS: A pragmatic literature review was conducted to map definitions of "untreated" pwMS, which informed a retrospective cohort study using the NeuroTransData (NTD) registry: a network of 119 German neurologists covering >22,000 pwMS. Pre-defined episodes, based on start and stop/pause dates of Disease Modifying Therapy (DMT), duration of untreated period, and MS subtype led to the following groups: treated/untreated PPMS, treated/untreated SPMS, and treated/untreated RRMS patients and >= 55 years old. Clinical and socioeconomic data were summarized with descriptive statistics.
RESULTS: A total of 7,456 pwMS were included (last documented MS subtype, RRMS:N=6580, SPMS:N=673, PPMS:N=203). The proportion of untreated patients declined between 2018 and 2024 (RRMS: 36.3%→24.4% ; SPMS: 73.7%→61.8%; PPMS: 85.6%→64.7%). Gaps persist in progressive MS and older RRMS patients (age >55), whose share among the untreated increased. Patient-driven reasons (e.g., lack of conviction) accounted for 40-54% of decisions to remain untreated in RRMS. Untreated SPMS and PPMS populations had the lowest DMT re-initiation rates (~40-50% within 5 years). Socioeconomic and clinical characteristics of untreated (N=888) and treated (N=695) RRMS patients with age>55 were similar, except for relapses in the previous year (ARR) of 0.10 vs 0.33. Untreated (N=144) and treated (N=164) PPMS patients had similar characteristics. Untreated SPMS patients (N=507) showed lower ARR (0.19 vs 0.29), and a higher proportion were >= 55 years compared to treated SPMS patients (N=432, 53.7 % vs 43.4 %).
CONCLUSIONS: Despite a declining trend in untreated MS cases, substantial treatment gaps persist. Progressive course, lower disease activity, age above 55, and patient preferences differentiated the untreated population. New therapeutic approaches are needed to address the remaining unmet need.
METHODS: A pragmatic literature review was conducted to map definitions of "untreated" pwMS, which informed a retrospective cohort study using the NeuroTransData (NTD) registry: a network of 119 German neurologists covering >22,000 pwMS. Pre-defined episodes, based on start and stop/pause dates of Disease Modifying Therapy (DMT), duration of untreated period, and MS subtype led to the following groups: treated/untreated PPMS, treated/untreated SPMS, and treated/untreated RRMS patients and >= 55 years old. Clinical and socioeconomic data were summarized with descriptive statistics.
RESULTS: A total of 7,456 pwMS were included (last documented MS subtype, RRMS:N=6580, SPMS:N=673, PPMS:N=203). The proportion of untreated patients declined between 2018 and 2024 (RRMS: 36.3%→24.4% ; SPMS: 73.7%→61.8%; PPMS: 85.6%→64.7%). Gaps persist in progressive MS and older RRMS patients (age >55), whose share among the untreated increased. Patient-driven reasons (e.g., lack of conviction) accounted for 40-54% of decisions to remain untreated in RRMS. Untreated SPMS and PPMS populations had the lowest DMT re-initiation rates (~40-50% within 5 years). Socioeconomic and clinical characteristics of untreated (N=888) and treated (N=695) RRMS patients with age>55 were similar, except for relapses in the previous year (ARR) of 0.10 vs 0.33. Untreated (N=144) and treated (N=164) PPMS patients had similar characteristics. Untreated SPMS patients (N=507) showed lower ARR (0.19 vs 0.29), and a higher proportion were >= 55 years compared to treated SPMS patients (N=432, 53.7 % vs 43.4 %).
CONCLUSIONS: Despite a declining trend in untreated MS cases, substantial treatment gaps persist. Progressive course, lower disease activity, age above 55, and patient preferences differentiated the untreated population. New therapeutic approaches are needed to address the remaining unmet need.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
PT28
Topic
Clinical Outcomes, Epidemiology & Public Health, Real World Data & Information Systems
Topic Subcategory
Distributed Data & Research Networks
Disease
Neurological Disorders