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Design, development and deployment of a web-based patient registry for rare genetic lipid disorders

Published 20 December 2020 Rare genetic lipid disorders comprise all the monogenic disorders of lipoprotein metabolism with the exception of heterozygous familial hypercholesterolaemia (FH). The creation and maintenance of patient registries is critical for disease monitoring, improving clinical best practice, facilitating research and enabling the development of novel therapeutics, but very few d

https://www.lupop.lu.se/article/design-development-and-deployment-web-based-patient-registry-rare-genetic-lipid-disorders - 2025-03-07

The Danish severe asthma register: an electronic platform for severe asthma management and research

Published 20 December 2020 The evaluation and management of severe asthma patients require collection of comprehensive information, which is often a challenge in a busy outpatient clinic. The Danish Severe Asthma Register (DSAR) was designed as an electronic patient record form that captures operational clinical data and provides a clinical overview of the severe asthma patient. DSAR is a nationwi

https://www.lupop.lu.se/article/danish-severe-asthma-register-electronic-platform-severe-asthma-management-and-research - 2025-03-07

Methods for Cleaning and Managing a Nurse-Led RegistryClinical registries provide insight on the quality of patient care by providing data to identify associations and patterns in diagnosis, disease, and treatment. This has led to a push toward using larg

Published 21 December 2020 Clinical registries provide insight on the quality of patient care by providing data to identify associations and patterns in diagnosis, disease, and treatment. This has led to a push toward using large data sets in healthcare research. Nurse researchers are developing data registries, but most are unaware of how to manage a data registry. This article examines a neurosc

https://www.lupop.lu.se/article/methods-cleaning-and-managing-nurse-led-registryclinical-registries-provide-insight-quality-patient - 2025-03-07

Validation of registration of pharmacological treatment in the Danish Hip and Knee Arthroplasty Registers

Published 21 December 2020 The aim of this study was to validate registration of pharmacological treatment in the Danish Hip Arthroplasty Register (DHR) and Danish Knee Arthroplasty Register (DKR). We conducted a population-based study in the Capital Region of Denmark, January 2012 to April 2016. Positive predictive value (PPV) and sensitivity were calculated with 95% confidence intervals (CI) for

https://www.lupop.lu.se/article/validation-registration-pharmacological-treatment-danish-hip-and-knee-arthroplasty-registers - 2025-03-07

The Chronic Urticaria Registry: rationale, methods and initial implementation

Published 22 December 2020 Chronic urticaria (CU) is a common disease, characterized by the recurrent appearance of wheals, angioedema or both for more than 6 weeks. Its underlying biology is not well understood, and many patients do not obtain sufficient relief from recommended treatments. Patient registries are rapidly growing as a form of research, because they can provide powerful, data‐driven

https://www.lupop.lu.se/article/chronic-urticaria-registry-rationale-methods-and-initial-implementation - 2025-03-07

Description of Emergency Medical Services, treatment of cardiac arrest patients and cardiac arrest registries in Europe

Published 22 December 2020 Variation in the incidence, survival rate and factors associated with survival after cardiac arrest in Europe is reported. Some studies have tried to fill the knowledge gap regarding the epidemiology of out-of-hospital cardiac arrest in Europe but were unable to identify reasons for the reported differences. Therefore, the purpose of this study was to describe European E

https://www.lupop.lu.se/article/description-emergency-medical-services-treatment-cardiac-arrest-patients-and-cardiac-arrest - 2025-03-07

Computerized registry as a potential tool for surveillance and management of complex bone and joint infections in France

Published 23 December 2020 Between 2012 and 2016, 30,607 presentations in MM were recorded corresponding to 17,748 individual patients (mean age 62.1 years (SD 18.4); 10,961 (61.8%) males). BJI was considered as complex for 63% of cases (n = 19,355), and 13,376 (44%) had prosthetic joint infections (PJIs). The controlled dataset, available for 19 centres, included 283 patients. Global consistency

https://www.lupop.lu.se/article/computerized-registry-potential-tool-surveillance-and-management-complex-bone-and-joint-infections - 2025-03-07

Spanish Pediatric Inflammatory Bowel Disease Diagnostic Delay Registry: SPIDER Study From Sociedad Española de Gastroenterología, Hepatología y Nutrición Pediátrica

Published 23 December 2020 Diagnostic delay (DD) is especially relevant in children with inflammatory bowel disease, leading to potential complications. We examined the intervals and factors for DD in the pediatric population of Spain. Read more at Frontiers | Spanish Pediatric Inflammatory Bowel Disease Diagnostic Delay Registry: SPIDER Study From Sociedad Española de Gastroenterología, Hepatolog

https://www.lupop.lu.se/article/spanish-pediatric-inflammatory-bowel-disease-diagnostic-delay-registry-spider-study-sociedad - 2025-03-07

The Swedish National Airway Register (SNAR): development, design and utility to date

Published 24 December 2020 SNAR includes data from patients with asthma (both children and adults) and COPD from primary, secondary and tertiary care, and also, for COPD inpatient care. Data on diagnostic investigations (e.g. spirometry, blood sample, skin prick test), symptom-scores, comorbidities and prescribed treatments are registered. The registrations are entered manually by healthcare profe

https://www.lupop.lu.se/article/swedish-national-airway-register-snar-development-design-and-utility-date - 2025-03-07

Predictors of health care practitioners’ normative attitudes and practices towards sexual and reproductive health and rights: a cross-sectional study of participants from low-income countries enrolled in a capacity-building program

Published 24 December 2020 Sexual and Reproductive Health and Rights (SRHR) is a concept of human rights applied to sexuality and reproduction. Suboptimal access to SRHR services in many low-income countries results in poor health outcomes. Sustainable development goals (3.7 and 5.6) give a new impetus to the aspiration of universal access to high-quality SRHR services. Indispensable stakeholders

https://www.lupop.lu.se/article/predictors-health-care-practitioners-normative-attitudes-and-practices-towards-sexual-and - 2025-03-07

Uncomplicated urinary tract infection in primary health care: presentation and clinical outcome

Published 25 December 2020 A prospective observational study in eight different PHC centres in Sweden including 192 women with symptoms of uncomplicated UTI. Questionnaires and symptom diaries were used to retrieve patient data. All urine samples were analysed with urine culture and susceptibility testing. The aim was to describe the clinical presentation of symptoms in uncomplicated UTI in relati

https://www.lupop.lu.se/article/uncomplicated-urinary-tract-infection-primary-health-care-presentation-and-clinical-outcome - 2025-03-07

Higher risk of major adverse cardiac events after acute myocardial infarction in patients with schizophrenia

Published 25 December 2020 All patients with schizophrenia who experienced AMI during 2000-2018 were identified (n=1008) from the nationwide Swedish Web-system for Enhancement and Development of Evidence-based care in Heart disease Evaluated According to Recommended Therapies registry and compared with AMI patients without schizophrenia (n=2 85 325). Kaplan-Meier survival curves and multivariable

https://www.lupop.lu.se/article/higher-risk-major-adverse-cardiac-events-after-acute-myocardial-infarction-patients-schizophrenia - 2025-03-07

Who chooses to enroll in a new national gambling self-exclusion system? A general population survey in Sweden

Published 26 December 2020 Self-exclusion from gambling is a common method for prevention and harm reduction in hazardous gambling. However, few national self-exclusion programs, involving a large number of gambling operators and activities in a country, have been assessed scientifically. This study aimed to examine characteristics of individuals who chose to enroll in a recently introduced (Janua

https://www.lupop.lu.se/article/who-chooses-enroll-new-national-gambling-self-exclusion-system-general-population-survey-sweden - 2025-03-07

Methylation Patterns and Chromatin Accessibility in Neuroendocrine Lung Cancer

Published 26 December 2020 Lung cancer is the worldwide leading cause of death from cancer. Epigenetic modifications such as methylation and changes in chromatin accessibility are major gene regulatory mechanisms involved in tumorigenesis and cellular lineage commitment. We aimed to characterize these processes in the context of neuroendocrine (NE) lung cancer. Illumina 450K DNA methylation data w

https://www.lupop.lu.se/article/methylation-patterns-and-chromatin-accessibility-neuroendocrine-lung-cancer - 2025-03-07

Association Between Apolipoprotein E ε2 vs ε4, Age, and β-Amyloid in Adults Without Cognitive Impairment

Published 27 December 2020 Although the most common recent approach in Alzheimer disease drug discovery is to directly target the β-amyloid (Aβ) pathway, the high prevalence of apolipoprotein E ε4 (APOE ε4) in Alzheimer disease and the ease of identifying ε4 carriers make the APOE genotype and its corresponding protein (apoE) an appealing therapeutic target to slow Aβ accumulation. Read more at As

https://www.lupop.lu.se/article/association-between-apolipoprotein-e-e2-vs-e4-age-and-b-amyloid-adults-without-cognitive-impairment - 2025-03-07

Psychiatric disorders in offspring of childhood or adolescent central nervous system tumor survivors: a national cohort study

Published 27 December 2020 Children experience a higher risk of psychiatric problems when their parents are diagnosed with cancer. However, the psychological effect among offspring who are born after parental cancer diagnosed in childhood or adolescence is unknown. We aimed to investigate the risk of psychiatric disorders in children of survivors with childhood or adolescent central nervous system

https://www.lupop.lu.se/article/psychiatric-disorders-offspring-childhood-or-adolescent-central-nervous-system-tumor-survivors - 2025-03-07

Prelabour caesarean section and neurodevelopmental outcome at 4 and 12 months of age: an observational study

Published 28 December 2020 With prelabour caesarean section rates growing globally, there is direct and indirect evidence of negative cognitive outcomes in childhood. The objective of this study was to assess the short-term neurodevelopmental outcomes after prelabour caesarean section as compared to vaginally born infants. Read more at Prelabour caesarean section and neurodevelopmental outcome at

https://www.lupop.lu.se/article/prelabour-caesarean-section-and-neurodevelopmental-outcome-4-and-12-months-age-observational-study - 2025-03-07

Adult‐onset diabetes in Middle Eastern immigrants to Sweden: Novel subgroups and diabetic complications—The All New Diabetes in Scania cohort diabetic complications and ethnicity

Published 28 December 2020 Middle Eastern immigrants to Europe represent a high risk population for type 2 diabetes. We compared prevalence of novel subgroups and assessed risk of diabetic macro‐ and microvascular complications between diabetes patients of Middle Eastern and European origin. Read more at Adult‐onset diabetes in Middle Eastern immigrants to Sweden: Novel subgroups and diabetic comp

https://www.lupop.lu.se/article/adult-onset-diabetes-middle-eastern-immigrants-sweden-novel-subgroups-and-diabetic-complications-all - 2025-03-07

Proteomic exploration of common pathophysiological pathways in diabetes and cardiovascular disease

Published 29 December 2020 The epidemiological association between diabetes and cardiovascular disease is well established, but the pathophysiological link is complex and multifactorial. We investigated seven proteins, previously linked to incident diabetes mellitus, and their association with cardiovascular disease and mortality. Read more at Proteomic exploration of common pathophysiological pat

https://www.lupop.lu.se/article/proteomic-exploration-common-pathophysiological-pathways-diabetes-and-cardiovascular-disease - 2025-03-07

Diagnostic potential of circulating cell‐free nuclear and mitochondrial DNA for several cancer types and nonmalignant diseases: A study on suspected cancer patients

Published 29 December 2020 Circulating cell‐free nuclear DNA (nDNA) has been implicated in individual cancer types with a diagnostic value; however, the role of cell‐free mitochondrial DNA (mtDNA) in cancers is controversial. We aimed to investigate and compare the diagnostic potential of both nDNA and mtDNA for multiple cancers and to investigate their ability to distinguish multiple cancers from

https://www.lupop.lu.se/article/diagnostic-potential-circulating-cell-free-nuclear-and-mitochondrial-dna-several-cancer-types-and - 2025-03-07