Biomed Pap Med Fac Univ Palacky Olomouc Czech Repub. 2024, 168(3):262-270 | DOI: 10.5507/bp.2023.015

The Czech National MS Registry (ReMuS): Data trends in multiple sclerosis patients whose first disease-modifying therapies were initiated from 2013 to 2021

Dominika Stastna1, Jiri Drahota1, 2, Michal Lauer2, 3, Aneta Mazouchova2, 3, Ingrid Menkyova1, 4, Jana Adamkova5, Radek Ampapa6, Michal Dufek7, Marketa Grunermelova8, Pavel Hradilek9, Eva Kubala Havrdova1, Jan Mares10, Alena Martinkova11, Zbysek Pavelek12, Marek Peterka12, 13, Eva Recmanova14, Petra Rockova15, Ivana Stetkarova16, Pavel Stourac17, Marta Vachova1, 18, Dana Horakova1
1 Department of Neurology and Centre of Clinical Neuroscience, First Faculty of Medicine, Charles University in Prague and General University Hospital, Prague, Czech Republic
2 Endowment Fund IMPULS, Prague, Czech Republic
3 Department of Economic Statistics, Prague University of Economics and Business, Prague, Czech Republic
4 2nd Department of Neurology, Faculty of Medicine, Comenius University, Bratislava, Slovak Republic
5 Department of Neurology, Hospital Ceske Budejovice, Ceske Budejovice, Czech Republic
6 Department of Neurology, Hospital of Jihlava, Jihlava, Czech Republic
7 First Department of Neurology, Masaryk University, St. Anne's University Hospital, Brno, Czech Republic
8 Department of Neurology, Thomayer Hospital, Prague, Czech Republic
9 Department of Neurology, University Hospital Ostrava, Ostrava, Czech Republic
10 Department of Neurology, Faculty of Medicine and Dentistry, Palacky University Olomouc and University Hospital Olomouc, Olomouc, Czech Republic
11 Department of Neurology, Hospitals of the Pardubice Region, Hospital of Pardubice, Pardubice, Czech Republic
12 Department of Neurology, Charles University in Prague, Faculty of Medicine and University Hospital Hradec Kralove, Hradec Kralove, Czech Republic
13 Department of Neurology, Charles University in Prague, Faculty of Medicine in Pilsen and University Hospital Pilsen, Pilsen, Czech Republic
14 Department of Neurology, Tomas Bata Regional Hospital, Zlin, Czech Republic
15 Department of Neurology, 2nd Faculty of Medicine, Charles University in Prague and Motol University Hospital, Prague, Czech Republic
16 Charles University in Prague, Third Faculty of Medicine, Charles University and Hospital Kralovske Vinohrady, Prague, Czech Republic
17 Department of Neurology, University Hospital Brno and Faculty of Medicine, Masaryk University, Brno, Czech Republic
18 Department of Neurology, KZ a.s., Hospital Teplice, Teplice, Czech Republic

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.

Keywords: multiple sclerosis, disease-modifying therapy, high-efficacy therapy, platform therapy, treatment initiation, real-world data, registry, epidemiology

Received: February 18, 2023; Revised: April 20, 2023; Accepted: April 21, 2023; Prepublished online: April 28, 2023; Published: September 12, 2024  Show citation

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Stastna, D., Drahota, J., Lauer, M., Mazouchova, A., Menkyova, I., Adamkova, J., ... Horakova, D. (2024). The Czech National MS Registry (ReMuS): Data trends in multiple sclerosis patients whose first disease-modifying therapies were initiated from 2013 to 2021. Biomedical papers, 168(3), 262-270. doi: 10.5507/bp.2023.015
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    References

    1. 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 Go to original source... Go to PubMed...
    2. 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 Go to original source... Go to PubMed...
    3. 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 Go to original source... Go to PubMed...
    4. 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 Go to original source... Go to PubMed...
    5. 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 Go to original source... Go to PubMed...
    6. 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 Go to original source... Go to PubMed...
    7. 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 Go to original source... Go to PubMed...
    8. 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 Go to original source... Go to PubMed...
    9. 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 Go to original source... Go to PubMed...
    10. 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 Go to original source... Go to PubMed...
    11. 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 Go to original source... Go to PubMed...
    12. 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) Go to original source...
    13. Kalincik T, Butzkueven H. The MSBase registry: Informing clinical practice. Mult Scler 2019;25(14):1828-34. doi:10.1177/1352458519848965 Go to original source... Go to PubMed...
    14. Big Multiple Sclerosis Data Network - The home of MS Real World Evidence! [cited 2022 Dec 17]. Available from: https://bigmsdata.org/
    15. 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 Go to original source... Go to PubMed...
    16. 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 Go to original source... Go to PubMed...
    17. 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 Go to original source... Go to PubMed...
    18. 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 Go to original source...
    19. 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 Go to original source... Go to PubMed...
    20. 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 Go to original source... Go to PubMed...
    21. 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 Go to original source... Go to PubMed...
    22. Coyle PK. What Can We Learn from Sex Differences in MS? J Pers Med 2021;11(10):1006. doi:10.3390/JPM11101006 Go to original source... Go to PubMed...
    23. 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 Go to original source... Go to PubMed...

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