Roztroušená skleróza (RS) je závažné neurologické onemocnění, které v České republice postihuje odhadem 20 tisíc pacientů. Nemoc zatím neumíme vyléčit, jedinou účinnou prevencí nevratné disability je včasné zahájení protizánětlivé terapie s trvalým monitoringem a úpravou terapie dle individuální aktivity nemoci. Zásadní význam pro vyhodnocení efektu a bezpečnosti léčby mají data z reálné klinické praxe. V České republice od r. 2013 pravidelný sběr těchto dat zajištuje celostátní registr ReMuS, jehož zřizovatelem je Nadační fond Impuls ve spolupráci s odbornou neurologickou společností. K 31. 12. 2019 byla v registru data od 16 300 pacientů, z toho 14 823 pacientů mělo zaznamenánu alespoň jednu návštěvu v RS centru v průběhu r. 2019. Článek přináší výběr aktuálních dat o demografii, klinických parametrech a léčbě v registru ReMuS.
Multiple sclerosis is a serious neurological disease that affects an estimated 20,000 patients in the Czech Republic. We are not yet able to cure the disease, the only effective prevention of irreversible disability is the timely initiation of anti-inflammatory therapy with continuous monitoring and adjustment of therapy according to individual activity of the disease. Data from real clinical practice are crucial for evaluating the efficacy and safety of treatment. In the Czech Republic since 2013, the regular collection of this data has been ensured by the nationwide ReMuS register, the founder of which is the Endowment Fund Impuls in cooperation with the Czech Neurological society. As of 31 December 2019, data from 16,300 patients were in the registry, of which 14,823 patients had at least 1 visit to the MS center during 2019. The article presents a selection of current data on demography, clinical parameters and treatment in the ReMuS registry.
- MeSH
- Comorbidity MeSH
- Medical Informatics statistics & numerical data MeSH
- Humans MeSH
- Drug-Related Side Effects and Adverse Reactions epidemiology MeSH
- Persons with Disabilities MeSH
- Registries * statistics & numerical data MeSH
- Multiple Sclerosis * epidemiology drug therapy MeSH
- Statistics as Topic MeSH
- Check Tag
- Humans MeSH
Roztroušená skleróza (RS) je závažné neurologické onemocnění. Odhaduje se, že v České republice trpí tímto onemocněním 20 000 pacientů. Bez léčby vede RS u většiny nemocných k významné disabilitě. Nemoc dnes díky moderní, bohužel nákladné terapii umíme u podstatné části pacientů zpomalit. Nové léky přinášejí nepochybně vyšší efektivitu, současně ale i větší riziko možných nežádoucích účinků, které je třeba velmi pečlivě monitorovat. Základem pro správný management péče o pacienta jsou vedle dat z registračních studií data o účinnosti a bezpečnosti léčby z reálné klinické praxe. Tato data lze získat cestou kvalitních registrů. V České republice od roku 2013 sbírá data registr ReMuS, který je zřizován neziskovým subjektem Nadačním fondem IMPULS ve spolupráci s odbornou společností. Za šest let trvání se počet pacientů zvýšil více než devětkrát, k 31. prosinci 2018 jsou v registru vložena data téměř 15 000 pacientů ze všech 15 specializovaných center v České republice. Registr poskytuje pravidelně důležitá průřezová data o demografii, tíži nemoci, typu léčby, práceschopnosti pacientů, začíná poskytovat i první významné longitudinální výstupy. Více informací lze nalézt na stránkách www.multiplesclerosis.cz.
Multiple sclerosis is a serious neurological illness affecting approximately 20,000 patients in the Czech Republic. Without treatment, the majority of patients develops a severe disability. Although there is still no cure for the disease, we can at least slow down its progress thanks to modern, but costly therapy. The modern drugs are undoubtfully more effective; however, they also pose a higher risk of developing various adverse events that must be carefully monitored. The basics of proper patient treatment management primarily rely on the data from the registration studies as well as the data regarding the treatment effectivity and safety obtained from real clinical practice. The latter data can be collected via high‑quality registries. In the Czech Republic, the registry ReMuS founded and run by a non‑governmental organization the Endowment Fund IMPULS together with the scientific community has been collecting the data since 2013. Over the six years of its existence, the number of patients monitored by ReMuS has increased more than ninefold; the registry contained data of almost 15 thousand patients from all 15 specialized centers in the Czech Repulic as of December 31, 2018. The registry regularly provides important cross‑sectional data on the demographics, the severity of the disease, the type of treatment, and the ability to work, and has also started to provide first longitudinal analysis. More information can be obtained at HYPERLINK "http://www.multiplesclerosis.cz/"www.multiplesclerosis.cz.
- MeSH
- Medical Records Systems, Computerized economics organization & administration manpower trends utilization MeSH
- Confidentiality legislation & jurisprudence MeSH
- Health Care Economics and Organizations MeSH
- Electronic Prescribing MeSH
- Electronic Health Records economics organization & administration manpower instrumentation statistics & numerical data utilization MeSH
- Patient Identification Systems economics methods trends utilization MeSH
- Information Systems trends MeSH
- Delivery of Health Care, Integrated economics methods organization & administration statistics & numerical data utilization MeSH
- Medical Informatics methods organization & administration manpower instrumentation statistics & numerical data MeSH
- Medical Informatics Computing economics statistics & numerical data trends utilization MeSH
- Humans MeSH
- Hospital Records standards legislation & jurisprudence MeSH
- Delivery of Health Care economics standards legislation & jurisprudence MeSH
- Information Storage and Retrieval economics methods statistics & numerical data utilization MeSH
- Check Tag
- Humans MeSH
- Publication type
- Newspaper Article MeSH
Objective: The aim of this paper is to study the inclusion of Informatics and Health Informatics subjects in the health sciences departments' curricula of higher education in Greece. Its main purpose is to determine the level of health informatics knowledge, dexterities and skills that these departments provide for their graduates. Method: Informatics and Health Informatics subjects were recorded from the departments' curricula available on their official Web sites. Afterwards, these subjects were categorised based on the description of the objectives, the content and the syllabus of each department and on the Goals of Informatics Education identified by the American Medical Informatics Association. Results: Our research indicated that most of the subjects mainly focus on introductory concepts and applications rather than on advanced issues of informatics, resulting, mostly, in producing Information Technology users rather than Health/Medical Informatics specialists. Conclusion: The study presented in this paper points out the imperative need of health educational programs of higher education in Greece to adjust their curricula to the current educational requirements in order to provide their graduates with the necessary knowledge in health information technologies.
- MeSH
- Information Management education MeSH
- Curriculum statistics & numerical data MeSH
- Medical Informatics statistics & numerical data education MeSH
- Humans MeSH
- Computer Literacy statistics & numerical data MeSH
- Schools, Health Occupations MeSH
- Computer User Training statistics & numerical data MeSH
- Education, Professional MeSH
- Check Tag
- Humans MeSH
- Geographicals
- Greece MeSH
