Description of the living population with multiple sclerosis in the Danish Multiple Sclerosis Registry
ECTRIMS Online Library. Magyari M. Sep 13, 2019; 278330; P1128
Dr. Melinda Magyari
Dr. Melinda Magyari

Abstract: P1128

Type: Poster Sessions

Abstract Category: Clinical aspects of MS - Epidemiology

M. Magyari1,2, T. Spelman1, H. Joensen1, P. S.Sorensen2

1The Danish Multiple Sclerosis Registry, 2Danish Multiple Sclerosis Center, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark

Introduction: The Danish Multiple Sclerosis Registry (DMSR) is a nationwide population-based registry that since 1956 has collected data on all Danish citizens with a diagnosis of multiple sclerosis (MS). Mandatory notification of visits, relapses, progression, side effects on patients with MS on disease modifying therapy (DMT) to the registry started in 1996. The DMSR is yearly linked with The Danish Civil Registration System which provides complete vital status and dates of death or emigration and with The Danish National Patient Register for validation of diagnosis.
Objective: The aim of the study is to describe the demographic and clinical characteristics of the living Danish MS population.
Methods: A descriptive analysis of the living MS population as currently tracked in the DMSR. The population was defined as all patients, who had received a diagnosis of MS and had not been recorded as having died or emigrated. Descriptive statistics were used to analyse both baseline and current patient characteristics including demography, disease course, Expanded Disability Status Scale (EDSS) score and current treatment.
Results: As of the 16th March 2019, there were a total of 15,149 patients living with MS with a mean age of 47.9 years, range 8.9-90.2 years. Of these 10,406 (68.7%) were female. Mean (SD) age at first symptoms and age at diagnosis was 33.9 years (10.7) and 37.7 years (11.3), respectively. Mean (SD) age at last recorded visit was 47.9 years (12.1). Their median (interquartile range) EDSS was 2.5 (1.5, 4). Relapsing-remitting (RRMS) was the most frequently reported disease course (7,582; 50.1%), followed by secondary progressive MS (1,239; 8.2%) and primary progressive MS (692; 4.6%) and for 37.1%, mainly patients with no recent entry, the disease course was not specified. A majority of the Danish living MS population were diagnosed in the treatment era, with 10,395 (68.6%) being diagnosed between 1996-2019. Of patients currently on treatment, teriflunomide was the most frequently used drug (1788; 11.8%) followed by fingolimod (1554; 10.3%), dimethyl fumarate (1234; 8.2%) and natalizumab (1149; 7.6%).
Conclusion: The DMSR, being population based and with a very high ascertainment of patients, can provide an unselected sample of patients for real-world safety and effectiveness studies. Register linkage also permits various studies on causality, environmental factors and on the social consequences of MS.
M.Magyari has served on scientific advisory board for Biogen, Sanofi, Teva, Roche, Novartis, Merck, has received honoraria for lecturing from Biogen, Merck, Novartis, Sanofi, Genzyme, has received research support and support for congress participation from Biogen, Genzyme, Teva, Roche, Merck, Novartis.
T. Spelman has received personal compensation for serving on scientific advisory boards, steering committees, or have received speaker honoraria for Biogen, Novartis and Merck
H. Joensen has nothing to disclose
P. S. Sørensen has received personal compensation for serving on scientific advisory boards, steering committees, independent data monitoring committees or have received speaker honoraria for Merck, Novartis, TEVA, GlaxoSmithKline, MedDay Pharmaceuticals, SanofiAventis/Genzyme, and Celgene.

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