ReMuS – CZECH NATIONAL REGISTRY OF MULTIPLE

P290, ECTRIMS, 8 October 2015, Barcelona
ReMuS – CZECH NATIONAL REGISTRY OF MULTIPLE
SCLEROSIS PATIENTS – 2 YEARS EXPERIENCE
endowment
fund
Dana Horakova; 2Martin Valis; 3Marta Vachova; 4Pavel Hradilek; 5Jaroslava Sucha; 6Alena Novotna; 7Radek Ampapa;
8
Marketa Grunermelova; 9Ivana Stetkarova; 10Pavel Stourac; 11Jan Mares; 12Jana Adamkova; 13Eva Meluzinova
1
Department of Neurology and Center of Clinical Neuroscience, Charles University in Prague, First Faculty of Medicine and General University Hospital, Prague; 2Department of Neurology,
Charles University in Prague, Faculty of Medicine in Hradec Kralove, and University Hospital Hradec Kralove; 3KZ a.s. Hospital, Teplice; 4Clinic of Neurology, University Hospital Ostrava;
5
Department of Neurology, Charles University in Prague, Faculty of Medicine in Pilsen, and University Hospital Pilsen; 6Neurology Clinic, Pardubice Regional Hospital and Faculty
of Health Studies, University of Pardubice; 7Department of Neurology, Hospital of Jihlava; 8Department of Neurology, Thomayer hospital, Prague; 9Charles University in Prague, 3rd Faculty
of Medicine, Hospital Kralovske Vinohrady; 10Department of Neurology, University Hospital Brno, Faculty of Medicine, Masaryk University, Brno; 11 Department of Neurology, Faculty
of Medicine and Dentistry, Palacky University, Olomouc; 12 Department of Neurology, Hospital Ceske Budejovice; 13Department of Neurology, 2nd Faculty of Medicine, Charles University
in Prague and Motol University Hospital
1
Figure 2 Total number of analysed
patients by centres
BACKGROUND
347 České Budějovice
Multiple sclerosis is a lifelong disease with a very heterogenous clinical course.
Randomised controlled clinical trials bring reliable but only short term data. Long term
data from real life conditions are needed.
173 Olomouc
341 Brno Bohunice
678 Hradec Králové
258 Krč
OBJECTIVES
253 Vinohrady
624 Ostrava
To report a structure, evolution, and first results from the Czech national registry ReMuS.
397 Pardubice
424 Plzeň
METHODS
777 Motol
213 Jihlava
The ReMuS is operated and completely funded by the Endowment Fund IMPULS (www.multiplesclerosis.cz) in collaboration with the Czech neuroimmunological society Fig. 1. The
preparation phase started in 2012 (included all administrative work related to data protection, signing contracts, implementation of software iMed (www.imed.org) in local MS centers). An Operational manual that defines logistics and all items to be collected was created. Demographic and history data are collected retrospectively at the first visit and then
prospectively at each visit in local center. Data is exported to a centralised database every
6 months. Final report is created and put on the web twice per year. The first stratum to be
added to this database was patients treated by disease modifying drugs. In first two years,
only data from this demographic were collected and added to the database. Since the third
year, data of all patients followed in the MS centers has been collected and sent.
671 Teplice
1943 VFN
Sex ratio female / male is 72/28%, average age 40.4 (SD 10.2), age at disease onset
30.3 (SD 9.4).
Annual relapse rate was 0.298. Average EDSS at the time of last visit was 2.7 (SD 1.5),
distribution of EDSS is in the Fig. 3.
Figure 3 Patient distribution by EDSS degree
Figure 1 ReMuS – project organization
All centres
40 %
30 %
endowment
fund
20 %
Czech
neuroimmunological
society
9,5 – 10
8,5 – 9
7,5 – 8
6,5 – 7
5,5 – 6
4,5 – 5
3,5 – 4
2,5 – 3
1,5 – 2
0–1
13/15
MS Centres
iMed
Data about treatment show the rate of particular drugs with interferons and glatiramer acetate as leading preparations. Fig. 4.
RESULTS
13 out of 15 Czech MS centers have already joined the registry. The number of patient
records has increased gradually from 1501 to 7099 in the last export in June 2015.
Table 1 and Fig. 2.
Table 1 Number of patients in the ReMuS registry - development
Data export date
0%
Not completed
Centralised
Database
Technical
Support
10 %
Number of centres
Number of patients to be analysed
7099
Octagam
13
Kiovig
30. 6. 2015
Gammagard
5639
Flebogamma
12
Tecfidera
31. 12. 2014
Aubagio
4715
Tysabri
12
Rebif (44)
30. 6. 2014
0%
Rebif (22)
2920
Gilenya
7
Extavia
31. 12. 2013
10 %
Copaxone
1501
20 %
Betaferon
3
All centres
30 %
Avonex
30. 6. 2013
Figure 4 Medicinal preparations used – Disease
Modifying Drugs and Intravenous immonoglobulins
The registry provides further data about distribution of patients in particular regions,
health insurance assignment, and important data about employment and disability
pension (67.8% of patients are employed and working full or part time). Fig. 5.
CONCLUSIONS
ReMuS, the Czech national registry, has already collected comprehensive data of more than 7000 patients. The aim is to enroll a majority of MS patients (approx. 13000) in the Czech
Republic within the next 2 years. The registry will soon provide
not only crossectinal, but also important longitudinal data.
This data will help to better organize care for MS patients in
the Czech Republic and also serve as an important scientific
platform for future endeavors.
Figure 5 Patient distribution by employment type
55 % Full-time employment
24 % Does not work
13 % Part-time employment
5 %
Not completed
3 %
Student
FUNDING: The ReMuS is funded by Endowment Fund IMPULS.
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