Search results for "registri"

showing 10 items of 634 documents

Major Congenital Anomalies in Babies Born With Down Syndrome

2014

Previous studies have shown that over 40% of babies with Down syndrome have a major cardiac anomaly and are more likely to have other major congenital anomalies. Since 2000, many countries in Europe have introduced national antenatal screening programs for Down syndrome. This study aimed to determine if the introduction of these screening programs and the subsequent termination of prenatally detected pregnancies were associated with any decline in the prevalence of additional anomalies in babies born with Down syndrome. The study sample consisted of 7,044 live births and fetal deaths with Down syndrome registered in 28 European population-based congenital anomaly registries covering seven m…

Heart Defects CongenitalMalemedicine.medical_specialtyDown syndromeSEX-DIFFERENCESEUROPEIMPACTDown syndromePrenatal diagnosisCardiac anomaliesPrenatal diagnosisHEART-DEFECTSDISEASECongenital AbnormalitiesSERUMSex FactorsAntenatal screeningGeneticsmedicineScreening programsHumansCARDIAC ANOMALYMALFORMATIONSRegistriesGenetics (clinical)prenatal diagnosisObstetricsbusiness.industrycardiac anomaliesInfant NewbornAbortion InducedEuropean populationmedicine.diseaseDown syndrome; cardiac anomalies; prenatal diagnosis3. Good healthPREVALENCELogistic ModelsFETAL NUCHAL TRANSLUCENCYFemalePopulation screeningbusinessPopulation-Based RegistryAmerican Journal of Medical Genetics. Part B: Neuropsychiatric Genetics
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The Association of H1N1 Pandemic Influenza with Congenital Anomaly Prevalence in Europe

2015

BACKGROUND: In the context of the European Surveillance of Congenital Anomalies (EUROCAT) surveillance response to the 2009 influenza pandemic, we sought to establish whether there was a detectable increase of congenital anomaly prevalence among pregnancies exposed to influenza seasons in general, and whether any increase was greater during the 2009 pandemic than during other seasons.METHODS: We performed an ecologic time series analysis based on 26,967 pregnancies with nonchromosomal congenital anomaly conceived from January 2007 to March 2011, reported by 15 EUROCAT registries. Analysis was performed for EUROCAT-defined anomaly subgroups, divided by whether there was a prior hypothesis of…

Heart Septal Defects VentricularPediatricsmedicine.medical_specialtyEpidemiologyEPIDEMICSPrevalenceCRITICAL PERIODSContext (language use)DiseaseILLNESSmedicine.disease_causeTricuspid AtresiaDISEASECongenital AbnormalitiesInfluenza A Virus H1N1 SubtypePregnancyCystic Adenomatoid Malformation of Lung CongenitalInfluenza HumanPandemicPrevalenceInfluenza A virusHumansMedicineNeural Tube DefectsRegistriesPregnancy Complications InfectiousPandemicsTetralogy of FallotRISKPregnancyOUTCOMESbusiness.industryABNORMALITIESInfant NewbornPOLICIESmedicine.diseaseEuropeVaccinationTetralogy of FallotVACCINATIONFemaleTricuspid Valve StenosisbusinessPREGNANT-WOMENEpidemiology
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Pharmacokinetic properties of recombinant FVIIa in inherited FVII deficiency account for a large volume of distribution at steady state and a prolong…

2014

Pharmacokinetic properties of recombinant FVIIa in inherited FVII deficiency account for a large volume of distribution at steady state and a prolonged pharmacodynamic effect -

HeredityPharmacokinetic inherited Factor VII deficiencyFactor VII DeficiencySocio-culturaleFactor VIIaPharmacologySeverity of Illness IndexPharmacokineticsPredictive Value of Testshemic and lymphatic diseasesHumansMedicineGenetic Predisposition to DiseaseFVII deficiencyRegistriescardiovascular diseasesBlood CoagulationVolume of distributionbiologyCoagulantsbusiness.industryVascular biologyrFVIIaHematologyFactor VIIRecombinant ProteinsPhenotypeTreatment OutcomerFVIIa; FVII deficiency; pharmacokineticsRecombinant factor VIIaPharmacodynamicsbiology.proteinBlood Coagulation TestsSteady state (chemistry)Drug Monitoringbusinesspharmacokinetics
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Prevalence, risk factor burden, and severity of coronary artery disease in patients with heterozygous familial hypercholesterolemia hospitalized for …

2019

Individuals with heterozygous familial hypercholesterolemia (FH) are at high risk of early myocardial infarction (MI). However, coronary artery disease (CAD) burden of FH remains not well described, especially for French patients.The objective of this study was to assess the prevalence of FH and severity of CAD from a large database of a French regional registry of acute MI.All consecutive patients hospitalized for an acute MI in a multicenter database from 2001 to 2017 were considered. FH was diagnosed using an algorithm adapted from the Dutch Lipid Clinic Network criteria. The prevalence and clinical features of FH and the severity of CAD were assessed.Among the 11,624 patients included i…

Heterozygotemedicine.medical_specialtyEndocrinology Diabetes and Metabolism[SDV]Life Sciences [q-bio]Myocardial InfarctionFamilial hypercholesterolemia030204 cardiovascular system & hematologySeverity of Illness IndexCohort StudiesHyperlipoproteinemia Type IICoronary artery disease03 medical and health sciences0302 clinical medicineRisk FactorsInternal medicinePrevalenceInternal MedicinemedicineHumansIn patientRegistries030212 general & internal medicineMyocardial infarctionRisk factorAcute miLipid clinicAgedAged 80 and overNutrition and Dieteticsbusiness.industryCholesterol LDLMiddle AgedEzetimibemedicine.disease3. Good healthLarge cohortHospitalizationFranceHydroxymethylglutaryl-CoA Reductase InhibitorsCardiology and Cardiovascular Medicinebusiness
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Association between use of novel glucose-lowering drugs and COVID-19 hospitalization and death in patients with type 2 diabetes: a nationwide registr…

2022

Abstract Aims Type 2 diabetes (T2DM) in patients with coronavirus disease-19 (COVID-19) is associated with a worse prognosis. We separately investigated the associations between the use of sodium-glucose cotransporter 2 inhibitors (SGLT2i), glucagon-like peptide-1 receptor agonists (GLP-1 RA), and dipeptidyl peptidase-4 inhibitors (DPP-4i), and the risk of COVID-19 hospitalization and death. Methods and results Patients with T2DM registered in the Swedish National Patient Registry and alive on 1 February 2020 were included. ‘Incident severe COVID-19’ was defined as the first hospitalization and/or death from COVID-19. A modified Poisson regression approach was applied to a 1:1 propensity sc…

HospitalizationDipeptidyl-Peptidase IV InhibitorsGlucoseDiabetes Mellitus Type 2Glucagon-Like Peptide 1COVID-19 Dipeptidyl peptidase-4 inhibitors (DPP-4i) Glucagon-like peptide-1 receptor agonists Hospitalization Mortality Sodium-glucose cotransporter 2 inhibitorsHumansCOVID-19Pharmacology (medical)RegistriesCardiology and Cardiovascular MedicineGlucagon-Like Peptide-1 Receptor
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Aspiration thrombectomy for patients with acute coronary syndromes and culprit lesions located in coronary bypass grafts. Data from the PL-ACS regist…

2022

HumansRegistriesAcute Coronary SyndromeCardiology and Cardiovascular MedicineCoronary AngiographyCoronary VesselsThrombectomyKardiologia Polska
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A practical framework for data management processes and their evaluation in population-based medical registries.

2013

We present a framework for data management processes in population-based medical registries. Existing guidelines lack the concreteness we deem necessary for them to be of practical use, especially concerning the establishment of new registries. Therefore, we propose adjustments and concretisations with regard to data quality, data privacy, data security and registry purposes.First, we separately elaborate on the issues to be included into the framework and present proposals for their improvements. Thereafter, we provide a framework for medical registries based on quasi-standard-operation procedures.The main result is a concise and scientifically based framework that tries to be both broad a…

Information privacyNursing (miscellaneous)Computer scienceData managementPopulationData securityHealth InformaticsConcretenessComputer securitycomputer.software_genreData acquisitionHealth Information ManagementGermanyNeoplasmsHumansRegistrieseducationComputer Securityeducation.field_of_studybusiness.industryReference StandardsData scienceData qualityPopulation SurveillanceComputer data storageMedical Record LinkagebusinesscomputerConfidentialityInformatics for healthsocial care
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Glycemic Outcome Associated With Insulin Pump and Glucose Sensor Use in Children and Adolescents With Type 1 Diabetes. Data From the International Pe…

2021

OBJECTIVE Insulin delivery methods, glucose-monitoring modalities, and related outcomes were examined in a large, international, diverse cohort of children and adolescents with type 1 diabetes from the Better Control in Pediatric and Adolescent Diabetes: Working to Create Centers of Reference (SWEET) -Registry. RESEARCH DESIGN AND METHODS Participants with type 1 diabetes of >= 1 year, aged <= 18 years, and who had documented pump or sensor usage during the period August 2017-July 2019 were stratified into four categories: injections-no sensor (referent); injections + sensor; pump-no sensor; and pump + sensor. HbA(1c) and proportion of patients with diabetic ketoacidosis (DKA) or severe hyp…

Insulin pumpKetoacidosisBlood Glucosemedicine.medical_specialtyDiabetic ketoacidosisAdolescentEndocrinology Diabetes and MetabolismDpv030209 endocrinology & metabolismHypoglycemia03 medical and health sciences0302 clinical medicineInsulin Infusion SystemsDiabetes mellitusInternal medicineInternal MedicinemedicineHumansHypoglycemic AgentsInsulin030212 general & internal medicineRegistriesChildGlycemicAdvanced and Specialized NursingGlycated HemoglobinType 1 diabetesbusiness.industryBlood Glucose Self-Monitoringmedicine.diseaseQualityHypoglycemiaKetoacidosisDiabetes Mellitus Type 1CohortTherapybusinessDiabetes Care
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epiPATH: an information system for the storage and management of molecular epidemiology data from infectious pathogens.

2007

Abstract Background Most research scientists working in the fields of molecular epidemiology, population and evolutionary genetics are confronted with the management of large volumes of data. Moreover, the data used in studies of infectious diseases are complex and usually derive from different institutions such as hospitals or laboratories. Since no public database scheme incorporating clinical and epidemiological information about patients and molecular information about pathogens is currently available, we have developed an information system, composed by a main database and a web-based interface, which integrates both types of data and satisfies requirements of good organization, simple…

Interface (computing)PopulationData securityBiologycomputer.software_genreBioinformaticsWork relatedCommunicable Diseaseslcsh:Infectious and parasitic diseasesRelational database management systemDatabases GeneticInformation systemHumanslcsh:RC109-216RegistrieseducationDatabase servereducation.field_of_studyInternetMolecular EpidemiologyDatabase schemaData scienceInfectious DiseasesDatabase Management SystemscomputerSoftwareBMC infectious diseases
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Early and midterm outcomes of bioresorbable vascular scaffolds for ostial coronary lesions: insights from the GHOST-EU registry.

2016

Aims: We aimed to investigate the outcomes of bioresorbable vascular scaffolds (BVS) in coronary ostial lesions. Ostial lesions represent a challenging angiographic subset, with higher event rates compared with non-ostial lesions. BVS might be associated with advantages over the long term, but their safety in this setting remains to be explored. Methods and results: Procedural and 12-month follow-up data from consecutive patients treated with BVS for lesions located at the ostium of the right (RCA), left anterior (LAD) or circumflex (LCX) coronary in 11 European centres were collected. The primary device-oriented endpoint was defined as a combination of cardiovascular death, target vessel m…

LCX (29Target lesionMale52%). Patients presenting with ostial lesions did not differ from the remaining cohort except for a higher incidence of prior revascularisation. Predilation was performed in 97% of the lesions (vs. 96% in non-ostialp= 0.035)medicine.medical_treatmentMyocardial Infarction304 patients with a mean age of 62 +/- 11years. There were 90 ostial lesions (5.8%) in 84 patients (6.4%) located at the ostial RCA (14Coronary Artery Disease030204 cardiovascular system & hematologyCoronary artery diseasebut their safety in this setting remains to be explored. Methods and results: Procedural and 12-month follow-up data from consecutive patients treated with BVS for lesions located at the ostium of the right (RCA)0302 clinical medicineAbsorbable Implants030212 general & internal medicineMyocardial infarctionCircumflexRegistriesTissue Scaffolds32%)Drug-Eluting StentsMiddle AgedThrombosisCoronary VesselsAims: We aimed to investigate the outcomes of bioresorbable vascular scaffolds (BVS) in coronary ostial lesions. Ostial lesions represent a challenging angiographic subset with higher event rates compared with non-ostial lesions. BVS might be associated with advantages over the long term but their safety in this setting remains to be explored. Methods and results: Procedural and 12-month follow-up data from consecutive patients treated with BVS for lesions located at the ostium of the right (RCA) left anterior (LAD) or circumflex (LCX) coronary in 11 European centres were collected. The primary device-oriented endpoint was defined as a combination of cardiovascular death target vessel myocardial infarction or target lesion revascularisation. The database included a total of 1549 lesions in 1304 patients with a mean age of 62 +/- 11years. There were 90 ostial lesions (5.8%) in 84 patients (6.4%) located at the ostial RCA (14; 16%) LCX (29; 32%) or LAD (47; 52%). Patients presenting with ostial lesions did not differ from the remaining cohort except for a higher incidence of prior revascularisation. Predilation was performed in 97% of the lesions (vs. 96% in non-ostial p= 0.618) post-dilation in 43% (versus 58% in the non-ostial group p= 0.008). At quantitative coronary angiography treatment of ostial lesions was associated with higher residual stenosis (30% [23-41] vs. 26% [20-37] p= 0.035) but no difference in minimum lumen diameter existed (p= 0.447). Follow-up data were available at 385 [362-465] days. The 12-month Kaplan-Meier estimated rates of scaffold thrombosis were 4.9% and 2.0% (ostial and non-ostial lesion groups respectively log-rank p= 0.005). The device-oriented composite endpoint occurred respectively in 12.6% and 4.6% at 12 months (log-rank p= 0.001). Treatment of ostial lesions was an independent predictor of this endpoint (p= 0.0025 HR 2.65 [1.41-4.97]).OstiumAims: We aimed to investigate the outcomes of bioresorbable vascular scaffolds (BVS) in coronary ostial lesions. Ostial lesions represent a challenging angiographic subsetTreatment Outcomein 12.6% and 4.6% at 12 months (log-rank p= 0.001). Treatment of ostial lesions was an independent predictor of this endpoint (p= 0.0025CardiologyFemale549 lesions in 1medicine.symptomCardiology and Cardiovascular MedicineAdultpost-dilation in 43% (versus 58% in the non-ostial groupmedicine.medical_specialtyor LAD (47HR 2.65 [1.41-4.97])but no difference in minimum lumen diameter existed (p= 0.447). Follow-up data were available at 385 [362-465] days. The 12-month Kaplan-Meier estimated rates of scaffold thrombosis were 4.9% and 2.0% (ostial and non-ostial lesion groupsrespectivelyLesion03 medical and health sciencesPercutaneous Coronary Interventionwith higher event rates compared with non-ostial lesions. BVS might be associated with advantages over the long termleft anterior (LAD) or circumflex (LCX) coronary in 11 European centres were collected. The primary device-oriented endpoint was defined as a combination of cardiovascular deathInternal medicinemedicineHumanstarget vessel myocardial infarction or target lesion revascularisation. The database included a total of 1Agedp= 0.008). At quantitative coronary angiographybusiness.industryPercutaneous coronary interventionp= 0.618)treatment of ostial lesions was associated with higher residual stenosis (30% [23-41] vs. 26% [20-37]log-rank p= 0.005). The device-oriented composite endpoint occurredmedicine.diseaseSurgery16%)businessEuroIntervention : journal of EuroPCR in collaboration with the Working Group on Interventional Cardiology of the European Society of Cardiology
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