AIMS: Multiple sclerosis treatment strategies are changing in the Czech Republic. According to data from 2013-2021, the proportion of patients starting high-efficacy disease-modifying therapies is increasing. In this survey, we describe the actual data trends in multiple sclerosis (MS) patients beginning their first disease‑modifying therapies (DMTs) from 2013 to 2021. The secondary objective was to present the history, data collection, and scientific potential of the Czech National MS registry (ReMuS). METHODS: First, using descriptive statistics, we analysed the data for patients starting their first DMTs, either platform (including dimethyl fumarate) or high-efficacy DMTs (HE-DMTs), for each successive year. Second, a detailed description of the history, data collection, completeness, quality optimising procedures, and legal policies of ReMuS is provided. RESULTS: Based on the dataset from December 31, 2021, the total number of monitored patients with MS in ReMuS increased from 9,019 in 2013 (referred from 7 of 15 MS centres) to 12,940 in 2016 (referred from all 15 Czech MS centres) to 17,478 in 2021. In these years, the percentage of patients treated with DMTs in the registry ranged from 76 to 83%, but the proportion of patients treated with HE-DMTs changed from 16.2% in 2013 to 37.1% in 2021. During the follow-up period, a total of 8,491 treatment-naive patients received DMTs. The proportion of patients (all MS phenotypes) starting HE-DMTs increased from 2.1% in 2013 to 18.5% in 2021. CONCLUSION: Patient registries, including ReMuS, provide an essential quality data source, especially in light of the increasing percentage of patients on HE-DMTs. Although early initiation of HE-DMT can provide considerable benefits, it also carries greater potential risks. Consistent long-term follow-up of patients in real‑world clinical practice, which only registries allow, is therefore crucial to evaluate the efficacy and safety of therapeutic strategies, for epidemiological research and to assist decision making by healthcare providers and regulatory bodies.

1st Department of Neurology Masaryk University St Anne's University Hospital Brno Czech Republic

2nd Department of Neurology Faculty of Medicine Comenius University Bratislava Slovak Republic

Charles University Prague 3rd Faculty of Medicine Charles University and Hospital Kralovske Vinohrady Prague Czech Republic

Department of Economic Statistics Prague University of Economics and Business Prague Czech Republic

Department of Neurology 2nd Faculty of Medicine Charles University Prague and Motol University Hospital Prague Czech Republic

Department of Neurology and Centre of Clinical Neuroscience 1st Faculty of Medicine Charles University Prague and General University Hospital Prague Czech Republic

Department of Neurology Charles University Prague Faculty of Medicine and University Hospital Hradec Kralove Hradec Kralove Czech Republic

Department of Neurology Charles University Prague Faculty of Medicine in Pilsen and University Hospital Pilsen Pilsen Czech Republic

Department of Neurology Faculty of Medicine and Dentistry Palacky University Olomouc and University Hospital Olomouc Olomouc Czech Republic

Department of Neurology Hospital Ceske Budejovice Ceske Budejovice Czech Republic

Department of Neurology Hospital of Jihlava Jihlava Czech Republic

Department of Neurology Hospitals of the Pardubice Region Hospital of Pardubice Pardubice Czech Republic

Department of Neurology KZ a s Hospital Teplice Teplice Czech Republic

Department of Neurology Thomayer Hospital Prague Czech Republic

Department of Neurology Tomas Bata Regional Hospital Zlin Czech Republic

Department of Neurology University Hospital Brno and Faculty of Medicine Masaryk University Brno Czech Republic

Department of Neurology University Hospital Ostrava Ostrava Czech Republic

Endowment Fund IMPULS Prague Czech Republic

See more in PubMed

Walton C, King R, Rechtman L, Kaye W, Leray E, Marrie RA, Robertson N, La Rocca N, Uitdehaag B, van der Mei I, Wallin M, Helme A, Angood Napier C, Rijke N, Baneke P. Rising prevalence of multiple sclerosis worldwide: Insights from the Atlas of MS, third edition. Mult Scler 2020;26(14):1816-21. doi:10.1177/1352458520970841 PubMed DOI

Marrie RA, Miller A, Sormani MP, Thompson A, Waubant E, Trojano M, O'Connor P, Reingold S, Cohen JA. The challenge of comorbidity in clinical trials for multiple sclerosis. Neurology 2016;86(15):1437-45. doi:10.1212/WNL.0000000000002471 PubMed DOI

Spelman T, Magyari M, Piehl F, Svenningsson A, Rasmussen PV, Kant M, Sellebjerg F, Joensen H, Hillert J, Lycke J. Treatment Escalation vs Immediate Initiation of Highly Effective Treatment for Patients With Relapsing-Remitting Multiple Sclerosis: Data From 2 Different National Strategies. JAMA Neurol 2021;78(10):1197-204. doi:10.1001/JAMANEUROL.2021.2738 PubMed DOI

Buron MD, Chalmer TA, Sellebjerg F, Barzinji I, Danny B, Christensen JR, Christensen MK, Hansen V, Illes Z, Jensen HB, Kant M, Papp V, Petersen T, Prakash S, Rasmussen PV, Schäfer J, Theódórsdóttir Á, Weglewski A, Sorensen PS, Magyari M. Initial high-efficacy disease-modifying therapy in multiple sclerosis: A nationwide cohort study. Neurology 2020;95(8):E1041-E1051. doi:10.1212/WNL.0000000000010135 PubMed DOI

Harding K, Williams O, Willis M, Hrastelj J, Rimmer A, Joseph F, Tomassini V, Wardle M, Pickersgill T, Robertson N, Tallantyre E. Clinical Outcomes of Escalation vs Early Intensive Disease-Modifying Therapy in Patients With Multiple Sclerosis. JAMA Neurol 2019;76(5):536-41. doi:10.1001/JAMANEUROL.2018.4905 PubMed DOI

He A, Merkel B, Brown JWL, Zhovits Ryerson L, Kister I, Malpas CB, Sharmin S, Horakova D, Kubala Havrdova E, Spelman T, Izquierdo G, Eichau S, Trojano M, Lugaresi A, Hupperts R, Sola P, Ferraro D, Lycke J, Grand'Maison F, Prat A, Girard M, Duquette P, Larochelle C, Svenningsson A, Petersen T, Grammond P, Granella F, Van Pesch V, Bergamaschi R, McGuigan C, Coles A, Hillert J, Piehl F, Butzkueven H, Kalincik T; MSBase study group. Timing of high-efficacy therapy for multiple sclerosis: a retrospective observational cohort study. Lancet Neurol 2020;19(4):307-16. doi:10.1016/S1474-4422(20)30067-3 PubMed DOI

Brown JWL, Coles A, Horakova D, Havrdova E, Izquierdo G, Prat A, Girard M, Duquette P, Trojano M, Lugaresi A, Bergamaschi R, Grammond P, Alroughani R, Hupperts R, McCombe P, Van Pesch V, Sola P, Ferraro D, Grand'Maison F, Terzi M, Lechner-Scott J, Flechter S, Slee M, Shaygannejad V, Pucci E, Granella F, Jokubaitis V, Willis M, Rice C, Scolding N, Wilkins A, Pearson OR, Ziemssen T, Hutchinson M, Harding K, Jones J, McGuigan C, Butzkueven H, Kalincik T, Robertson N; MSBase Study Group. Association of Initial Disease-Modifying Therapy With Later Conversion to Secondary Progressive Multiple Sclerosis. JAMA 2019;321(2):175-87. doi:10.1001/JAMA.2018.20588 PubMed DOI

Uher T, Krasensky J, Malpas C, Bergsland N, Dwyer MG, Kubala Havrdova E, Vaneckova M, Horakova D, Zivadinov R, Kalincik T. Evolution of Brain Volume Loss Rates in Early Stages of Multiple Sclerosis. Neurology - Neuroimmunology Neuroinflammation 2021;8(3):e979. doi:10.1212/NXI.0000000000000979 PubMed DOI

Simonsen CS, Flemmen HØ, Broch L, Brunborg C, Berg-Hansen P, Moen SM, Celius EG. Early High Efficacy Treatment in Multiple Sclerosis Is the Best Predictor of Future Disease Activity Over 1 and 2 Years in a Norwegian Population-Based Registry. Front Neurol 2021; 12:693017. doi:10.3389/FNEUR.2021.693017 PubMed DOI

Prosperini L, Mancinelli CR, Solaro CM, Nociti V, Haggiag S, Cordioli C, De Giglio L, De Rossi N, Galgani S, Rasia S, Ruggieri S, Tortorella C, Capra R, Mirabella M, Gasperini C. Induction Versus Escalation in Multiple Sclerosis: A 10-Year Real World Study. Neurotherapeutics 2020;17(3):994. doi:10.1007/S13311-020-00847-0 PubMed DOI

Horakova D, Rockova P, Jircikova J, Dolezal T, Vachova M, Hradilek P, Valis M, Sucha J, Martinkova A, Ampapa R, Grunermelova M, Stetkarova I, Stourac P, Mares J, Dufek M, Kmetova E, Adamkova J, Hrnciarova T. Initiation of first disease-modifying treatment for multiple sclerosis patients in the Czech republic from 2013 to 2016: Data from the national registry ReMuS. Mult Scler Relat Disord 2019;35:196-202. doi:10.1016/J.MSARD.2019.08.003 PubMed DOI

Horáková, Dana. Jaká data nabízí celostátní registr pacientů s roztroušenou sklerózou ReMuS? Neurol praxi 2020;21(5):410-13. doi:10.36290/NEU.2020.101 (In Czech) DOI

Kalincik T, Butzkueven H. The MSBase registry: Informing clinical practice. Mult Scler 2019;25(14):1828-34. doi:10.1177/1352458519848965 PubMed DOI

Big Multiple Sclerosis Data Network - The home of MS Real World Evidence! [cited 2022 Dec 17]. Available from: https://bigmsdata.org/

Pavelek Z, Sobíšek L, Šarláková J, Potužník P, Peterka M, Štětkárová I, Štourač P, Mareš J, Hradílek P, Ampapa R, Grünermelová M, Vachová M, Recmanová E, Angelucci F, Halúsková S, Vališ M. Comparison of Therapies in MS Patients After the First Demyelinating Event in Real Clinical Practice in the Czech Republic: Data From the National Registry ReMuS. Front Neurol 2021;11:593527. doi:10.3389/FNEUR.2020.593527 PubMed DOI

Stastna D, Menkyova I, Drahota J, Hrnciarova T, Kubala Havrdova E, Vachova M, Andelova M, Kleinova P, Kovarova I, Krasulova E, Preiningerova JL, Novakova I, Novotna K, Novotna M, Nytrova P, Pavlickova J, Srpova B, Storey K, Ticha V, Tyblova M, Uher T, Vodehnalova K, Horakova D. To be or not to be vaccinated: The risk of MS or NMOSD relapse after COVID-19 vaccination and infection. Mult Scler Relat Disord 2022;65:104014. doi:10.1016/J.MSARD.2022.104014 PubMed DOI

Hradilek P, Meluzinova E, Zapletalova O, Hanulikova P, Horakova D, Woznicova I, Pavliska L, Stetkarova I, Valis M, Stourac P, Adamkova J, Ampapa R, Vachova M, Mares J. Is pregnancy in MS patients safe and what is its impact on MS course? Real World evidence of 1533 pregnancies in Czech Republic. Mult Scler Relat Disord 2022;59:103391. doi:10.1016/J.MSARD.2021.103391 PubMed DOI

Horáková D, Vachová M, Tvaroh A, Drahota J, Mazouchova A, Mares J, Woznicova I, Zimova D, Libertinova J, Martinkova A, Recmanova E, Grunermelova M, Valis M, Adamkova J, Ampapa R, Benesova Y, Dufek M, Peterka M, Kubala Havrdova E. Oral cladribine in the treatment of multiple sclerosis - data from the national registry ReMuS® registry. Cesk Slov Neurol N 2021;84(6):555-61. doi:10.48095/CCCSNN2021555 DOI

Stastna D, Menkyova I, Drahota J, Mazouchova A, Adamkova J, Ampapa R, Grunermelova M, Peterka M, Recmanova E, Rockova P, Rous M, Stetkarova I, Valis M, Vachova M, Woznicova I, Horakova D. Multiple sclerosis, neuromyelitis optica spectrum disorder and COVID-19: A pandemic year in Czechia. Mult Scler Relat Disord 2021;54:103104. doi:10.1016/J.MSARD.2021.103104 PubMed DOI

Leblanc S, Lefort M, Le Page E, Michel L, Leray E. Trends in disease-modifying therapy use in patients with multiple sclerosis using a 10-year population-based cohort study in France. Expert Rev Neurother 2022;22(5):411-18. doi:10.1080/14737175.2022.2061950 PubMed DOI

Filippi M, Danesi R, Derfuss T, Duddy M, Gallo P, Gold R, Havrdová EK, Kornek B, Saccà F, Tintoré M, Weber J, Trojano M. Early and unrestricted access to high-efficacy disease-modifying therapies: a consensus to optimize benefits for people living with multiple sclerosis. J Neurol 1234;269:1670-77. doi:10.1007/s00415-021-10836-8 PubMed DOI

Coyle PK. What Can We Learn from Sex Differences in MS? J Pers Med 2021;11(10):1006. doi:10.3390/JPM11101006 PubMed DOI

Rotstein D, Montalban X. Reaching an evidence-based prognosis for personalized treatment of multiple sclerosis. Nat Rev Neurol 2019;15(5):287-300. doi:10.1038/S41582-019-0170-8 PubMed DOI

Real-world effectiveness of cladribine as an escalation strategy for MS: Insights from the Czech nationwide ReMuS registry

Big Multiple Sclerosis Data network: an international registry research network