Literature DB >> 29870621

[The Multiple Sclerosis Registry of Szeged].

Krisztina Bencsik1, Dániel Sandi1, Tamás Biernacki1, Zsigmond Kincses1, Judit Füvesi1, Zsanett Fricska-Nagy1, László Vécsei1,2.   

Abstract

Multiple sclerosis (MS) is a rare disease of the central nervous system considering the total population, the prevalence in Hungary is 83.9/100.000. The first MS registry was established in Denmark in the middle of the 1950's. This was followed by the establishment of several national, then international databases with the number of enrolled patients in the hundred-thousands. At the beginning, the primary goal of the registries were the epidemiological surveys, focusing on the number of patients, the prevalence, the incidence, the mortality and the co-morbidity. As of today, however, with the rapid advancement and development of new disease modifying therapies (DMT) with different effectiveness and adverse reactions, the therapeutic use of the registries became even more essential: the modern, up-to-date, well established registries become integral part of the DMTs' monitorization. The Multiple Sclerosis Registry of Szeged was first established as a "paper-based" database, then, in 2012, it was upgraded to an electronic, easily contactable and useable internet-based registry. As of today, it contains the socio-demographic and clinical data of more than 600 patients; we constantly add new patients as well as keep the registry up-to-date with the refreshment of old patients' data. Aside from the "classical" clinical data, it can be used for the recording and assessment of the MRI scans and the data on psychopathological and quality of life assessments, which are becoming more and more important in everyday MS management. The establishment of the internet-based registry incredibly helped both the monitorization of the effectiveness of DMTs, and the success of the new epidemiological and psychopathological surveys.

Entities:  

Keywords:  Hungary; epidemiology; multiple sclerosis; registry; treatment

Mesh:

Year:  2017        PMID: 29870621     DOI: 10.18071/isz.70.0301

Source DB:  PubMed          Journal:  Ideggyogy Sz        ISSN: 0019-1442            Impact factor:   0.427


  3 in total

1.  Contributing factors to health-related quality of life in multiple sclerosis.

Authors:  Tamás Biernacki; Dániel Sandi; Zsigmond Tamás Kincses; Judit Füvesi; Csilla Rózsa; Klotild Mátyás; László Vécsei; Krisztina Bencsik
Journal:  Brain Behav       Date:  2019-11-11       Impact factor: 2.708

2.  Do Hungarian multiple sclerosis care units fulfil international criteria?

Authors:  Zsófia Kokas; Dániel Sandi; Zsanett Fricska-Nagy; Judit Füvesi; Tamás Biernacki; Ágnes Köves; Ferenc Fazekas; Adrienne Jóri Birkás; Gabriella Katona; Krisztina Kovács; Dániel Milanovich; Enikő Dobos; István Kapás; Gábor Jakab; Tünde Csépány; Erzsébet Bense; Klotild Mátyás; Gábor Rum; Zoltán Szolnoki; István Deme; Zita Jobbágy; Dávid Kriston; Zsuzsanna Gerócs; Péter Diószeghy; László Bors; Adrián Varga; Levente Kerényi; Gabriella Molnár; Piroska Kristóf; Zsuzsanna Ágnes Nagy; Mária Sátori; Piroska Imre; Szilvia Péntek; Péter Klivényi; Zsigmond Tamás Kincses; László Vécsei; Krisztina Bencsik
Journal:  PLoS One       Date:  2022-03-03       Impact factor: 3.240

3.  Epidemiology of multiple sclerosis in Central Europe, update from Hungary.

Authors:  Tamás Biernacki; Dániel Sandi; Zsanett Fricska-Nagy; Zsigmond Tamás Kincses; Judit Füvesi; Rózsa Laczkó; Zsófia Kokas; Péter Klivényi; László Vécsei; Krisztina Bencsik
Journal:  Brain Behav       Date:  2020-03-20       Impact factor: 2.708

  3 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.