prospective data collection Dotaz Zobrazit nápovědu
BACKGROUND: By 2030, over 50% of individuals living with bipolar disorder (BD) are expected to be aged ≥50 years. However, older age bipolar disorder (OABD) remains understudied. There are limited large-scale prospectively collected data organized in key dimensions capable of addressing several fundamental questions about BD affecting this subgroup of patients. METHODS: We developed initial recommendations for the essential dimensions for OABD data collection, based on (1) a systematic review of measures used in OABD studies, (2) a Delphi consensus of international OABD experts, (3) experience with harmonizing OABD data in the Global Aging & Geriatric Experiments in Bipolar Disorder Database (GAGE-BD, n ≥ 4500 participants), and (4) critical feedback from 34 global experts in geriatric mental health. RESULTS: We identified 15 key dimensions and variables within each that are relevant for the investigation of OABD: (1) demographics, (2) core symptoms of depression and (3) mania, (4) cognition screening and subjective cognitive function, (5) elements for BD diagnosis, (6) descriptors of course of illness, (7) treatment, (8) suicidality, (9) current medication, (10) psychiatric comorbidity, (11) psychotic symptoms, (12) general medical comorbidities, (13) functioning, (14) family history, and (15) other. We also recommend particular instruments for capturing some of the dimensions and variables. CONCLUSION: The essential data dimensions we present should be of use to guide future international data collection in OABD and clinical practice. In the longer term, we aim to establish a prospective consortium using this core set of dimensions and associated variables to answer research questions relevant to OABD.
- Klíčová slova
- international collaboration, older age bipolar disorder, prospective studies,
- MeSH
- bipolární porucha * diagnóza epidemiologie terapie MeSH
- kognice MeSH
- lidé MeSH
- prospektivní studie MeSH
- sběr dat MeSH
- senioři MeSH
- směrnice pro lékařskou praxi jako téma MeSH
- stárnutí psychologie MeSH
- Check Tag
- lidé MeSH
- senioři MeSH
- Publikační typ
- časopisecké články MeSH
- práce podpořená grantem MeSH
The Czech Ophthalmologic Society (member of the Czech Medical Society of Jan Evangelista Purkyne) in collaboration with the Institute of Biostatistics and Analysis of the Masaryk University in Brno established a nation-wide information system for the follow-up of the epidemiology and treatment of the exsudative age-related macular degeneration (ARMD). The project named AMADEUS is a multi-centric, non-invasive, observation prospective study with the aim to improve the patients' treatment and to unify the criteria for the follow-up of the ARMD in the real clinical practice in the Czech Republic. The basic instrument of the whole project is a clinical register collecting parametric data from 9 specialized centers. Especially the project monitors the photodynamic therapy with Verteporfyrine (Visudyne) and treatment by anti-VEGF agents, or Pegaptanib (Macugen) and Ranibizumab (Lucentis). The project's protocol is trying to collect representative data about ARMD diagnosis and treatment; during regularly controls, the efficacy and safety of the treatment are followed-up.The data collecting does not influence the treatment strategy or the availability of chosen treatment for the patient. Since October 2008 until the end of the year 2009, the registry collected complex information about more than 1402 newly treated ARMD patients; out of them, in 582 cases the one-year follow-up period was regularly terminated. The available data shows well-considered indication of drugs indications by the doctors; the treated patients fulfill the indications criteria set by the scientific society. According to the data from the registry, in some treating centers the application schedule is not followed-up in some drugs (especially Pegaptanib); there is the possibility to improve the treatment. All the clinical centers participating in the AMADEUS registry will continue in the data collecting, which after a longer period of time will facilitate further treatment optimization and eliminating of the established imperfections. Further information about the project may be found at the web site: www.amadeus.registry.cz.
- MeSH
- databáze faktografické * MeSH
- lidé MeSH
- makulární degenerace terapie MeSH
- registrace * MeSH
- sběr dat MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- anglický abstrakt MeSH
- časopisecké články MeSH
- Geografické názvy
- Česká republika MeSH
The evidence for the value of particle therapy (PT) is still sparse. While randomized trials remain a cornerstone for robust comparisons with photon-based radiotherapy, data registries collecting real-world data can play a crucial role in building evidence for new developments. This Perspective describes how the European Particle Therapy Network (EPTN) is actively working on establishing a prospective data registry encompassing all patients undergoing PT in European centers. Several obstacles and hurdles are discussed, for instance harmonization of nomenclature and structure of technical and dosimetric data and data protection issues. A preferred approach is the adoption of a federated data registry model with transparent and agile governance to meet European requirements for data protection, transfer, and processing. Funding of the registry, especially for operation after the initial setup process, remains a major challenge.
- MeSH
- lidé MeSH
- nádory radioterapie MeSH
- prospektivní studie MeSH
- protonová terapie MeSH
- registrace * MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- úvodníky MeSH
- Geografické názvy
- Evropa MeSH
In the paper we show results of two programs applied for data analysis and decision support in primary preventive study of atherosclerosis. First program E.T. (Epidemiology Tools) can be used for analysis of data from retrospective (case-control) studies, prospective (cohort) studies and for standardization. Second program called CORE (COnstitution and REduction) supports the process of selection of features that are relevant for given decision making task. Program CORE is using information theory approach. Both these programs were applied to analysis of data about 1417 middle age men collected in the longitudinal study on atherosclerosis in urban population. Apart from these two new programs we have analyzed data also by the STATISTICA software.
- MeSH
- arterioskleróza etiologie prevence a kontrola MeSH
- dospělí MeSH
- hodnocení rizik MeSH
- interpretace statistických dat * MeSH
- lidé středního věku MeSH
- lidé MeSH
- longitudinální studie MeSH
- matematické výpočty počítačové MeSH
- prospektivní studie MeSH
- retrospektivní studie MeSH
- software MeSH
- stochastické procesy MeSH
- systémy pro podporu klinického rozhodování * MeSH
- Check Tag
- dospělí MeSH
- lidé středního věku MeSH
- lidé MeSH
- mužské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- práce podpořená grantem MeSH
Narcolepsy with cataplexy is a rare disease with an estimated prevalence of 0.02% in European populations. Narcolepsy shares many features of rare disorders, in particular the lack of awareness of the disease with serious consequences for healthcare supply. Similar to other rare diseases, only a few European countries have registered narcolepsy cases in databases of the International Classification of Diseases or in registries of the European health authorities. A promising approach to identify disease-specific adverse health effects and needs in healthcare delivery in the field of rare diseases is to establish a distributed expert network. A first and important step is to create a database that allows collection, storage and dissemination of data on narcolepsy in a comprehensive and systematic way. Here, the first prospective web-based European narcolepsy database hosted by the European Narcolepsy Network is introduced. The database structure, standardization of data acquisition and quality control procedures are described, and an overview provided of the first 1079 patients from 18 European specialized centres. Due to its standardization this continuously increasing data pool is most promising to provide a better insight into many unsolved aspects of narcolepsy and related disorders, including clear phenotype characterization of subtypes of narcolepsy, more precise epidemiological data and knowledge on the natural history of narcolepsy, expectations about treatment effects, identification of post-marketing medication side-effects, and will contribute to improve clinical trial designs and provide facilities to further develop phase III trials.
- Klíčová slova
- European Narcolepsy Centres, epidemiology, multicentre studies, narcolepsy, prospective data collection, standardized prospective database,
- MeSH
- databáze faktografické * normy MeSH
- dospělí MeSH
- fenotyp MeSH
- internet MeSH
- kataplexie farmakoterapie epidemiologie MeSH
- lidé středního věku MeSH
- lidé MeSH
- mladiství MeSH
- mladý dospělý MeSH
- narkolepsie * farmakoterapie epidemiologie MeSH
- postmarketingový dozor MeSH
- prospektivní studie MeSH
- registrace * normy MeSH
- řízení kvality MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- šíření informací MeSH
- vzácné nemoci farmakoterapie epidemiologie MeSH
- Check Tag
- dospělí MeSH
- lidé středního věku MeSH
- lidé MeSH
- mladiství MeSH
- mladý dospělý MeSH
- mužské pohlaví MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- Geografické názvy
- Evropa epidemiologie MeSH
AIM: Understanding cardiac electronic device infective endocarditis epidemiology is essential for the management of this serious complication. Only monocentric and limited data have been published regarding patients in the Czech republic so far. The aim of this study was to describe the current profile, microbiology and clinical characteristics of this population. PATIENTS AND METHODS: National data from the prospective ESC-EORP EURO-ENDO registry were collected. 57 consecutive patients with a diagnosis of cardiac device-related infective endocarditis (CDRIE) from 11 Czech centres were included. RESULTS: Staphylococcus spp. was responsible for 43.9% of isolates, whereas Culture negative endocarditis was documented in 26.3% episodes. The most frequent complications under therapy were acute renal failure (17.5%), septic shock and heart failure (both 10.5%). Extraction of device was performed in 75.4% of all patients, and the 1-year mortality was 22.5%. CONCLUSIONS: The high proportion of culture-negative endocarditis is alarming and warrants further investigation. Cardiac device related infective endocarditis is a serious complication with a high 1-year mortality in a highly polymorbid spectrum of patients.
- Klíčová slova
- cardiac device complication, cardiac electronic device infective endocarditis, infective endocarditis,
- MeSH
- bakteriální endokarditida * epidemiologie etiologie MeSH
- defibrilátory implantabilní * škodlivé účinky MeSH
- endokarditida * komplikace etiologie MeSH
- lidé MeSH
- prospektivní studie MeSH
- registrace MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- Geografické názvy
- Česká republika epidemiologie MeSH
BACKGROUND: Hospital-acquired pneumonia (HAP) is associated with high mortality. In Central Europe, there is a dearth of information on the prevalence and treatment of HAP. This project was aimed at collecting multicenter epidemiological data on patients with HAP in the Czech Republic and comparing them with supraregional data. METHODS: This prospective, multicenter, observational study processed data from a database supported by a Czech Ministry of Health grant project. Included were all consecutive patients aged 18 and over who were admitted to participating intensive care units (ICUs) between 1 May 2013 and 31 December 2014 and met the inclusion criterion of having HAP. The primary endpoint was to analyze the relationships between 30-day mortality (during the stay in or after discharge from ICUs) and the microbiological etiological agent and adequacy of initial empirical antibiotic therapy in HAP patients. RESULTS: The group dataset contained data on 330 enrolled patients. The final validated dataset involved 214 patients, 168 males (78.5%) and 46 females (21.5%), from whom 278 valid lower airway samples were obtained. The mean patient age was 59.9 years. The mean APACHE II score at admission was 21. Community-acquired pneumonia was identified in 13 patients and HAP in 201 patients, of whom 26 (12.1%) had early-onset and 175 (81.8%) had late-onset HAP. Twenty-two bacterial species were identified as etiologic agents but only six of them exceeded a frequency of detection of 5% (Klebsiella pneumoniae 20.4%, Pseudomonas aeruginosa 20.0%, Escherichia coli 10.8%, Enterobacter spp. 8.1%, Staphylococcus aureus 6.2% and Burkholderia cepacia complex 5.8%). Patients infected with Staphylococcus aureus had significantly higher rates of early-onset HAP than those with other etiologic agents. The overall 30-day mortality rate for HAP was 29.9%, with 19.2% mortality for early-onset HAP and 31.4% mortality for late-onset HAP. Patients with late-onset HAP receiving adequate initial empirical antibiotic therapy had statistically significantly lower 30-day mortality than those receiving inadequate initial antibiotic therapy (23.8% vs 42.9%). Patients with ventilator-associated pneumonia (VAP) had significantly higher mortality than those who developed HAP with no association with mechanical ventilation (34.6% vs 12.7%). Patients having VAP treated with adequate initial antibiotic therapy had lower 30-day mortality than those receiving inadequate therapy (27.2% vs 44.8%). CONCLUSIONS: The present study was the first to collect multicenter data on the epidemiology of HAP in the Central European Region, with respect to the incidence of etiologic agents causing HAP. It was concerned with relationships between 30-day patient mortality and the type of HAP, etiologic agent and adequacy of initial empirical antibiotic therapy.
- Klíčová slova
- HAP, VAP, antibiotic therapy, hospital-acquired pneumonia, mortality,
- MeSH
- antibakteriální látky terapeutické užití MeSH
- bakteriální pneumonie epidemiologie MeSH
- infekce spojené se zdravotní péčí epidemiologie MeSH
- lidé středního věku MeSH
- lidé MeSH
- prevalence MeSH
- prospektivní studie MeSH
- ventilátorová pneumonie epidemiologie MeSH
- Check Tag
- lidé středního věku MeSH
- lidé MeSH
- mužské pohlaví MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- multicentrická studie MeSH
- pozorovací studie MeSH
- srovnávací studie MeSH
- Geografické názvy
- Česká republika epidemiologie MeSH
- Názvy látek
- antibakteriální látky MeSH
PURPOSE: Analysis of predefined characteristics and outcomes in a non-selected population of patients hospitalized for acute heart failure (AHF) in Slovakia. METHODS: We conducted a nationwide prospective multicenter survey with 860 consecutive patients enrolled in 11 hospitals throughout Slovakia--two centres with a non-stop catheterization service, two central and 7 regional hospitals. Relevant data of 78 characteristics in 9 categories were collected during 3 months (between 1 May 2009 and 31 July 2009). There was a specific form designed for this survey. Collected data were then transferred into the electronic database and statistically analysed. RESULTS: Mean age was 72 years, 81% of patients were in NYHA class III/IV (52% male). The majority of patients were admitted with decompensated heart failure (68.4%), frequency of cardiogenic shock was 0.3%. New-onset AHF (AHF de novo) was diagnosed in 31.1%, of which 20.8% was due to acute coronary syndromes. Coronary heart disease was the predominant primary aetiology of AHF (67%), followed by almost equally represented hypertension (10.5%), valvular disease (10%) and dilated cardiomyopathy (9%). Hypertension was referred as the most frequent comorbidity (82%), followed by atrial fibrillation (48%), diabetes mellitus (42%), history of renal failure (31%) and with anaemia at admission (38%). Rales were the dominant physical sign (69.9%). Systolic blood pressure greater than 140 mm Hg was present in 37.8% and QRS length > 120 ms in 21.4% of patients. Preserved left ventricular ejection fraction (> or = 40%) was observed in 57% out of 70% documented cases in the whole survey. 23.3% of patients had a history of coronary angiography. 84.3% of patients received intravenous treatment, diuretics, nitrates and inotropes were given to 82.2%, 18% and 6%, respectively. The number of patients with cardiac resynchronization therapy (CRT), with or without defibrillator function, was 0.9%. Mean length of stay was 9.2 days and in-hospital mortality was 9.1%. At discharge, 76% of patients were on angiotensin-converting enzyme inhibitors (ACE-I) or angiotensin receptor blockers (ARB), 62% were using beta-blockers (BB), however the doses of drugs were lower then recommended values. CONCLUSIONS: Results of the survey are comparable with other observational studies, surveys and large registries. Although the percentage of patients with ACE-I/ARB and BB at discharge seems promising, there is still area for improvement in AHF patients health care.
- MeSH
- akutní nemoc MeSH
- hospitalizace * MeSH
- lidé MeSH
- prognóza MeSH
- sběr dat MeSH
- srdeční selhání * diagnóza patofyziologie terapie MeSH
- výsledek terapie MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- anglický abstrakt MeSH
- časopisecké články MeSH
- Geografické názvy
- Slovenská republika MeSH
INTRODUCTION: Data describing contemporary profile of infective endocarditis (IE) in the Czech Republic are lacking. The aim of this study was to describe the current profile and outcomes of IE patients. METHODS: Prospectively collected data on consecutive patients admitted for IE diagnosis between April 2016 and March 2018 to 11 main tertiary care cardiac centers in the Czech Republic were used for this analysis. RESULTS: Among 208 patients, 88 patients (42.3 %) had native valve IE (NVIE), 56 patients (26.9 %) had prosthetic valve IE (PVIE), and 57 patients (27.4 %) had intracardiac device-related IE (CDRIE). The mean age was 61.66±15.54 years. Staphylococcus aureus was the most common etiological agent of IE (27.4 %), whereas Culture negative IE was present in 26.4 % patients. Surgery was performed during hospitalization in 112 (53.8 %) patients. In-hospital death occurred in 21.2 % patients, while 1-year mortality was 40.3 %. In patients, who had an indication for surgery, but the procedure was not performed, mortality was significantly higher (p=0.002). CONCLUSION: High proportion of culture negative IE and IE related to artificial intra-cardiac materials calls for action. Furthermore, we show that cardiac surgery should be more often contemplated, especially in the presence of risk factors as septic shock and congestive heart failure (Tab. 6, Fig. 1, Ref. 32).
- Klíčová slova
- infective endocarditis, mortality, surgery Czech Republic.,
- MeSH
- bakteriální endokarditida * diagnóza epidemiologie terapie MeSH
- lidé středního věku MeSH
- lidé MeSH
- mortalita v nemocnicích MeSH
- prospektivní studie MeSH
- registrace MeSH
- rizikové faktory MeSH
- senioři MeSH
- Check Tag
- lidé středního věku MeSH
- lidé MeSH
- senioři MeSH
- Publikační typ
- časopisecké články MeSH
- Geografické názvy
- Česká republika epidemiologie MeSH
AIM: To examine the incidence and trends in pediatric inflammatory bowel diseases (IBDs) over 2000-2015 and project the incidence to 2018. METHODS: A 16-year prospective study of IBD patients < 19 years of age was conducted in the Czech Republic (the Pilsen region). All incident IBD cases within a well-defined geographical area were retrieved from a prospectively collected computerized clinical database. Historical Czech data were used for comparison (1990-2001). Our catchment population was determined from the census data. We calculated the incidence by relating the number of newly diagnosed cases to the size of the pediatric population-at-risk in each calendar year. Age/sex, disease type, place of residence, and race/ethnicity were identified. RESULTS: In total, 170 new IBD cases [105 Crohn's disease (CD), 48 ulcerative colitis (UC), and 17 IBD-unclassified (IBD-U)] were identified. The median age at IBD diagnosis was 14.2 years, 59.4% were males, and 97.1% were Caucasians. A male preponderance of IBD (P = 0.026) and CD (P = 0.016) was observed. With 109209 person-years in the catchment area, the average incidence of IBD per 100000 person-years was 10.0 (6.2 for CD, 2.8 for UC, and 1.0 for IBD-U) for children aged 0 to 19 years; for those aged 0 to 15 years, the incidence rate was 7.3 (4.6 for CD, 2.0 for UC, and 0.7 for IBD-U). An increase in incidence with age was observed (P = 0.0003). Over the 16-year period, the incidence increased for IBD patients (P = 0.01) and CD in particular (P < 0.0001), whereas the incidence for UC (P = 0.09) and IBD-U (P = 0.339) remained unchanged. IBD-projected data from 2016 to 2018 were 12.1, 12.3 and 12.6 per 100000 person-years, respectively. CONCLUSION: Pediatric-onset IBD incidence is around its highest point. The increase, which is particularly pronounced for CD, may be challenging to relate to causes of pediatric disease.
- Klíčová slova
- Children, Crohn’s disease, Czech Republic, Incidence, Inflammatory bowel disease, Pilsen region, Projections, Ulcerative colitis,
- MeSH
- časové faktory MeSH
- Crohnova nemoc diagnóza epidemiologie MeSH
- databáze faktografické MeSH
- dítě MeSH
- incidence MeSH
- kojenec MeSH
- lidé MeSH
- mladiství MeSH
- předškolní dítě MeSH
- prospektivní studie MeSH
- spádové území zdravotních služeb * MeSH
- ulcerózní kolitida diagnóza epidemiologie MeSH
- věkové rozložení MeSH
- Check Tag
- dítě MeSH
- kojenec MeSH
- lidé MeSH
- mladiství MeSH
- mužské pohlaví MeSH
- předškolní dítě MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- Geografické názvy
- Česká republika epidemiologie MeSH