BACKGROUND: The EURO-NMD Registry collects data from all neuromuscular patients seen at EURO-NMD's expert centres. In-kind contributions from three patient organisations have ensured that the registry is patient-centred, meaningful, and impactful. The consenting process covers other uses, such as research, cohort finding and trial readiness. RESULTS: The registry has three-layered datasets, with European Commission-mandated data elements (EU-CDEs), a set of cross-neuromuscular data elements (NMD-CDEs) and a dataset of disease-specific data elements that function modularly (DS-DEs). The registry captures clinical, neuromuscular imaging, neuromuscular histopathology, biological and genetic data and patient-reported outcomes in a computer-interpretable format using selected ontologies and classifications. The EURO-NMD registry is connected to the EURO-NMD Registry Hub through an interoperability layer. The Hub provides an entry point to other neuromuscular registries that follow the FAIR data stewardship principles and enable GDPR-compliant information exchange. Four national or disease-specific patient registries are interoperable with the EURO-NMD Registry, allowing for federated analysis across these different resources. CONCLUSIONS: Collectively, the Registry Hub brings together data that are currently siloed and fragmented to improve healthcare and advance research for neuromuscular diseases.

• MeSH
• lidé MeSH
• neuromuskulární nemoci * genetika   MeSH
• registrace MeSH
• vzácné nemoci MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• přehledy MeSH

BACKGROUND: Management and treatment of severe aortic stenosis (AS) may differ considerably in European countries. To investigate these differences in France, Germany, and the UK, the IMPULSE enhanced registry was established. Previous data revealed differences in how patients were managed in specialist (hub) versus primary/secondary care (satellite) centres. METHODS: The IMPULSE enhanced registry sub-analysis aimed to determine if there were gender-specific differences for patients with severe AS at centres with and without access to intervention. RESULTS: Among the 790 patients, 594 and 196 were recruited at hub and satellite centres, respectively; 44 % of patients were female. In both settings, women were older than men (hubs: 78.7 vs. 76.2, p = 0.007; satellites: 79.8 vs. 75.1, p = 0.002). Symptoms at the presentation were comparable. Males had more often undergone previous cardiac surgery. Females had a smaller left ventricular (LV) outflow tract, smaller LV cavities, and, more often, a preserved ejection fraction (>50 %). There was no gender-based difference in time to intervention. At one year, the cumulative incidence of aortic valve replacement in females was higher than in males in hubs (p = 0.012) but not in satellites (p = 0.600); surgical AVR was more common in males in hubs only (p = 0.008), while transcatheter aortic valve implantation was more common in females in both settings (hubs: p < 0.001; satellites: p = 0.022). One-year survival was comparable in both genders, regardless of setting. CONCLUSIONS: A better understanding of gender-specific differences in patients with severe AS, according to the diagnostic setting, could improve patient stratification and earlier diagnosis.

• MeSH
• aortální stenóza * epidemiologie   diagnóza   terapie   chirurgie   MeSH
• lidé MeSH
• management nemoci * MeSH
• následné studie MeSH
• pohlavní dimorfismus * MeSH
• primární zdravotní péče * trendy   MeSH
• registrace * MeSH
• sekundární péče * trendy   MeSH
• senioři nad 80 let MeSH
• senioři MeSH
• sexuální faktory MeSH
• stupeň závažnosti nemoci * MeSH
• Check Tag
• lidé MeSH
• mužské pohlaví MeSH
• senioři nad 80 let MeSH
• senioři MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• multicentrická studie MeSH
• srovnávací studie MeSH
• Geografické názvy
• Francie MeSH
• Německo MeSH
• Spojené království MeSH

V článku je popsán výskyt tuberkulózy způsobené multirezistentními kmeny Mycobacterium tuberculosis (MDR TB) v České republice v letech 2003 až 2008. Hlavním zdrojem dat byl Informační systém bacilární tuberkulózy a Registr tuberkulózy, další potřebné informace byly získány od příslušných krajských konzultantů TBC, odpovědných zaměstnanců krajských hygienických stanic, Národní referenční laboratoře pro mykobakterie a od lékařů oddělení pneumologie a ftizeologie. Byly sledovány následující proměnné: věk nemocného v roce, kdy byla MDR poprvé zjištěna, pohlaví, země původu, lokalizace TBC procesu, zda se jednalo o recidivu a zda byl pacient již dříve pro tuberkulózu léčen, způsob zjištění onemocnění, výsledek vyšetření (zda byl vzorek pozitivní i mikroskopicky), výsledek vyšetření citlivosti na další antituberkulotika 1. řady, HIV status a výskyt rizikových faktorů TBC. MDR kmen byl během sledovaného období diagnostikován u 61 pacientů z celkem 4 114 případů (1,5 %), u kterých bylo provedeno vyšetření citlivosti kmene M. tuberculosis na isoniazid a rifampicin. Mezi nejdůležitější zjištění patří problémy v interpretaci laboratorních výsledků, občasná neshoda v názorech lékařů mikrobiologů a pneumologů, zda se jedná o MDR TB či nikoli a také poměrně častý nesoulad v záznamech dvou paralelně fungujících částí Registru tuberkulózy.

The incidence of tuberculosis caused by multidrug-resistant strains Mycobacterium tuberculosis (MDRTB) in the Czech Republic in 2003-2008 was described. The national web-based Information System of Bacillary Tuberculosis and TB Registry have served as the main sources of data; further information was obtained from regional TB consultants, regional public health institutes, the National Reference Mycobacterium Laboratory and physicians from departments of tuberculosis and respiratory diseases. The following variables were analyzed: age in the year of the first MDR detection, gender, country of origin, localization of TB process, a relapse of TB, previous TB treatment, way of disease detection, examination results (smear positivity), results of drug susceptibility testing to other first-line anti-TB drugs, HIV status, and presence of risk factors for tuberculosis. An MDR strain was diagnosed in 61 patients out of overall 4,114 cases (1.5 %) undergoing drug susceptibility testing of M. tuberculosis strains to isoniazid and rifampicin. The most important findings include difficulties with laboratory result interpretation, occasional disagreement between pneumologists and microbiologists as to whether the case is (or is not) MDR TB, and also relatively frequent discrepancies in records of the two simultaneously functioning parts of the TB Registry.

• MeSH
• antituberkulotika škodlivé účinky   terapeutické užití   MeSH
• epidemiologie statistika a číselné údaje   MeSH
• fungální léková rezistence genetika   imunologie   účinky léků   MeSH
• HIV infekce MeSH
• incidence MeSH
• isoniazid škodlivé účinky   terapeutické užití   MeSH
• lidé MeSH
• multirezistentní tuberkulóza epidemiologie   MeSH
• Mycobacterium tuberculosis izolace a purifikace   patogenita   účinky léků   MeSH
• registrace statistika a číselné údaje   MeSH
• rifampin škodlivé účinky   terapeutické užití   MeSH
• rizikové faktory MeSH
• statistika jako téma MeSH
• tuberkulóza diagnóza   epidemiologie   etiologie   MeSH
• Check Tag
• lidé MeSH
• Geografické názvy
• Česká republika MeSH

Background: Severe aortic stenosis (AS) is one of the most common and most serious valve diseases. Without timely intervention with surgical aortic valve replacement or transcatheter aortic valve replacement, patients have an estimated survival of 2-3 years. Guidelines for the treatment of AS have been developed, but studies suggest that as many as 42% of patients with AS are not treated according to these recommendations.The aims of this registry are to delineate the caseload of patients with AS, outline the management of these patients and determine appropriateness of treatments in participating centres with and without onsite access to surgery and percutaneous treatments. Methods/design: The IMPULSE enhanced registry is an international, multicentre, prospective, observational cohort registry conducted at four central full access centres (tertiary care hospitals) and at least two satellite centres per hub (primary/secondary care hospitals). An estimated 800 patients will be enrolled in the registry and patient follow-up will last for 12 months. Discussion: In addition to the primary aims determining the caseload management and outcome of patients with AS in primary, secondary and tertiary care settings, the registry will also determine a time course for the transition from asymptomatic to symptomatic status and the diagnostic steps, treatment decisions and the identification of decision-makers in tertiary versus primary/secondary care hospitals. The last patient will be enrolled in the registry in 2018 and results of the registry are anticipated in 2019. Registration number: NCT03112629.

• Publikační typ
• časopisecké články MeSH

Článek volně navazující na již publikované sdělení „Výskyt tuberkulózy vyvolané multirezistentními kmeny Mycobacterium tuberculosis v České republice v letech 2003 až 2008“ je zaměřen na léčebné výsledky pacientů s tuberkulózou vyvolanou multirezistentními kmeny M. tuberculosis (MDR TB) v České republice v letech 2003 až 2008. Hlavním zdrojem dat byl Informační systém bacilární tuberkulózy a Registr tuberkulózy, další potřebné informace byly získány od příslušných krajských konzultantů TBC, odpovědných zaměstnanců krajských hygienických stanic, Národní referenční laboratoře pro mykobakterie a od lékařů specializace pneumologie a ftizeologie. MDR kmen byl během sledovaného období diagnostikován u 61 pacientů. Nejdůležitějším zjištěním je nízké procento léčebných úspěchů za 24 měsíců od zahájení terapie (28 %), které je srovnatelné s výsledky ze států EU/EEA.

The article, as a free continuation of the previously published paper „The occurrence of tuberculosis caused by multidrug-resistant strains Mycobacterium tuberculosis in the Czech Republic during 2003-2008", focuses on the treatment outcomes of patients with tuberculosis caused by multidrug-resistant strains M. tuberculosis (MDR TB) in the Czech Republic in 2003-2008. The national web-based Information System of Bacillary Tuberculosis and TB Registry served as the main sources of data, further information was obtciined from regional TB consultants, regional public health institutes, the National Reference Mycobacterium Laboratory and pneumologists. During the monitored period, MDR strains were diagnosed in 61 patients. The most important finding is a low percentage of successful outcomes after 24-month treatment (28 %), which is comparable with results from the EU/EEA countries.

• Klíčová slova
• MDR TB, AT léčba, výsledky léčby,
• MeSH
• adherence pacienta MeSH
• antituberkulotika aplikace a dávkování   škodlivé účinky   terapeutické užití   MeSH
• epidemiologie statistika a číselné údaje   MeSH
• fungální léková rezistence genetika   imunologie   účinky léků   MeSH
• isoniazid MeSH
• lidé MeSH
• multirezistentní tuberkulóza diagnóza   farmakoterapie   terapie   MeSH
• Mycobacterium tuberculosis izolace a purifikace   patogenita   účinky léků   MeSH
• rifampin MeSH
• statistika jako téma MeSH
• tuberkulóza diagnóza   farmakoterapie   terapie   MeSH
• výsledky a postupy - zhodnocení (zdravotní péče) MeSH
• Check Tag
• lidé MeSH
• Geografické názvy
• Česká republika MeSH

BACKGROUND: The next-generation Watchman FLX left atrial appendage closure (LAAC) device has: (1) an atraumatic closed distal end, (2) reduced height, (3) a recessed screw hub to decrease device-related thrombus (DRT), (4) two rows of J-shape anchors so redeployment is possible after full recapture, and (5) ability to treat a greater size range of LAA ostia. OBJECTIVE: To report, for the first time, the feasibility and safety of intracardiac echocardiography (ICE)-guided Watchman FLX implantation. METHODS: A single-center prospective registry of atrial fibrillation patients planned for LAAC with the FLX device underwent ICE-guided implantation with conscious sedation. Transesophageal echocardiography (TEE) imaging was done preprocedure (to assess LAA size and exclude thrombus) and at clinical follow-up at 6-12 weeks. Clinical outcomes were LAA closure success, complications, leak, or DRT on follow-up TEE and major safety events. RESULTS: The study included 30 patients: age 75 ± 8 years, 53% men, CHA2 DS2 -VASc 4.6 ± 1.6, and HAS-BLED 3.4 ± 1.1. The primary indication was prior bleeding in 60% (72% GI bleeding). The LAA orifice width and length were 22.7 ± 3.1 and 25.7 ± 5.7 mm, respectively. Technical success was 100% (the first-choice device was used in 28 of 30). Procedure time was less than 30 min in 27 of 30 cases, with 36 ± 15 ml contrast used. The final device size was 29.2 ± 4.7 mm with 21.6 ± 4.5% compression. There were no procedure-related complications. Follow-up TEE at a median 47 days follow-up showed 100% device success with no DRT or peridevice leak ≥5 mm. Major safety events occurred in 6.6% (2/30). CONCLUSION: The Watchman FLX device can be safely implanted with intraprocedural ICE imaging instead of TEE.

• MeSH
• cévní mozková příhoda * MeSH
• echokardiografie transezofageální MeSH
• fibrilace síní * diagnostické zobrazování   chirurgie   MeSH
• lidé MeSH
• senioři nad 80 let MeSH
• senioři MeSH
• síňové ouško * diagnostické zobrazování   chirurgie   MeSH
• srdeční katetrizace škodlivé účinky   MeSH
• výsledek terapie MeSH
• Check Tag
• lidé MeSH
• mužské pohlaví MeSH
• senioři nad 80 let MeSH
• senioři MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH

Publikácia sa zameriava na diagnostiku infekčných chorôb pomocou mikrobiologických techník. Určené praktickým lekárom.; Praktický manuál pre všeobecných lekárov – komplexný sprievodca mikrobiologickou diagnostikou.

• MeSH
• infekce MeSH
• infekční nemoci diagnóza   MeSH
• mikrobiologické jevy MeSH
• mikrobiologické techniky MeSH
• praktické lékařství MeSH

• Konspekt
• Mikrobiologie
• NLK Obory
• mikrobiologie, lékařská mikrobiologie
• všeobecné lékařství
• infekční lékařství
• NLK Publikační typ
• kolektivní monografie

• MeSH
• antidota MeSH
• chemické látky - účinky a užití MeSH
• chemicky indukované poruchy MeSH
• první pomoc MeSH
• toxické účinky MeSH
• Publikační typ
• příručky MeSH

• Konspekt
• Farmacie. Farmakologie
• NLK Obory
• toxikologie

This paper describes the opportunities and challenges in building ST-elevation acute myocardial infarction (STEMI) systems of care in Stent for Life affiliated and collaborating so-called emerging countries, namely India, China, South Africa and Mexico, where CAD mortality is increasing and becoming a significant healthcare problem. The Stent for Life model supports the implementation of ESC STEMI Guidelines in Europe and endeavours to impact on morbidity and mortality by improving services and developing regional STEMI systems of care, whereby STEMI patients' timely access to a primary percutaneous coronary intervention (PPCI) is assured. In India, the STEMI India model incorporates a dual approach of combining PPCI with a pharmacoinvasive strategy of reperfusion. The architecture of the system is based on a hub and spoke model with each unit called a STEMI cluster. The project is driven by a private non-profit organisation. In China, the STEMI PCI programme is led by the Chinese College of Cardiovascular Physicians and supported by the national government. Although primary PCI is performed nationwide, a thrombolytic treatment strategy is still the first option in many rural areas because of logistic considerations. Establishing local STEMI transfer networks and then implementing a pharmacoinvasive strategy of reperfusion are being considered and promoted currently. In South Africa, the pharmacoinvasive approach currently dominates as STEMI treatment option in many areas. A pilot study shows that low symptom awareness leads to long patient delays. The education of all role players, from patients to healthcare professionals and including institutions and governmental structures, is needed to achieve prompt diagnosis and treatment. In Mexico, improving the treatment of STEMI requires considering myocardial infarction to be an emergency that must be treated by an entire system and not just by a particular service. Patients need to receive quick treatment from clinical and interventional cardiologists, and the emergency medical system (EMS) must understand the importance of early reperfusion therapy when appropriate. Mexican health authorities have used registries as their main strategy for improving the use of health resources for ACS patients. In general, building regional STEMI systems of care and an EMS system infrastructure are critical success factors in the stepwise development of STEMI systems of care at a national level in emerging countries as they are in Europe. An in-depth understanding of healthcare system-level barriers to timely and appropriate reperfusion therapy facilitates the development of more effective strategies for improving the quality of STEMI care in each region and country.

• MeSH
• infarkt myokardu terapie   MeSH
• koronární angioplastika * metody   MeSH
• lidé MeSH
• poskytování zdravotní péče * MeSH
• reperfuze myokardu metody   MeSH
• stenty * MeSH
• urgentní zdravotnické služby * MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• přehledy MeSH
• Geografické názvy
• Evropa MeSH

Publikace se zabývá správnými stravovacími vzorci a výživou z teoretického a praktického hlediska.

• MeSH
• fyziologie výživy MeSH
• jídelníček MeSH
• potraviny MeSH
• zdravá strava MeSH
• Publikační typ
• monografie MeSH
• populární práce MeSH

• Konspekt
• Kuchařství. Potraviny. Vařená jídla
• NLK Obory
• nutriční terapie, dietoterapie a výživa