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Read more at Moving breast implant registries forward: Are they FAIR and Functional? - PubMed (nih.gov)
https://www.lupop.lu.se/article/moving-breast-implant-registries-forward-are-they-fair-and-functional - 2025-10-15
Good data curation is integral to cohort studies, but it is not always done to a level necessary to ensure the longevity of the data a study holds. In this opinion paper, we introduce the concept of data curation debt—the data curation equivalent to the software engineering principle of technical debt. Using the context of UK cohort studies, we define data curation debt—describing examples and the
https://www.lupop.lu.se/article/recognizing-reporting-and-reducing-data-curation-debt-cohort-studies - 2025-10-15
In Denmark, vaccination coverage is measured using the Danish Vaccination Register (DDV). In general, the vaccination coverage is high, but for some vaccinations, the coverage is suboptimal with geographical variation. This study aims to validate the vaccination coverage of the 5-year booster and identify overall reasons for non-vaccination in Copenhagen. Read more at Underreporting of the 5-year
Evidence-based information available at the point of care improves patient care outcomes. Online knowledge bases can increase the application of evidence-based medicine and influence patient outcome data which may be captured in quality registries. The aim of this study was to explore the effect of use of an online knowledge base on patient experiences and health care quality. Read more at Use of
The Danish Multiple Sclerosis Registry is the oldest operative and nationwide MS registry. We present The Danish Multiple Sclerosis Registry with its history, data collection, scientific contribution, and national and international research collaboration. Read more at The Danish Multiple Sclerosis Registry - PubMed (nih.gov)
https://www.lupop.lu.se/article/danish-multiple-sclerosis-registry - 2025-10-15
Esophageal cancer is the eighth most common cause of cancer mortality in Japan. More than 11,000 people had died from esophageal cancer in 2018. The Japan Esophageal Society has collected the data on patients' characteristics, performed treatment, and outcomes annually. Read more at Comprehensive registry of esophageal cancer in Japan, 2013 | SpringerLink
https://www.lupop.lu.se/article/comprehensive-registry-esophageal-cancer-japan-2013 - 2025-10-15
Physician suicide is a growing public health crisis that affects the medical community and patients. Literature on physician suicide has been published since 1903. However, the epidemiology of physician suicide including incidence is unclear due to a lack of accurate data. Lack of reliable data can lead to barriers in developing effective physician suicide prevention programs and creating policies
https://www.lupop.lu.se/article/survey-assess-need-national-registry-track-physician-suicide - 2025-10-15
Epidemiological data on pulmonary embolism (PE) in China needs to be updated and reported. The China Pulmonary Thromboembolism Registry Study (CURES) is designed to provide the cross-sectional spectrum and chronological trends of PE in China, as well as to reveal the intrinsic etiology and pathogenesis of the disease. Read more at Rational and design of the China Pulmonary Thromboembolism Registry
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 disease-specific rare geneti
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 nationwide register; all patients i
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 neuroscience nursing registry to d
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 antithrombotic, antihemorr
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 insights about the epidemi
https://www.lupop.lu.se/article/chronic-urticaria-registry-rationale-methods-and-initial-implementation - 2025-10-15
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 Emergency Medical Systems, p
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 and completeness were estim
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, Hepatología y Nutrición Pediátrica |
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 professionals, or directly trans
https://www.lupop.lu.se/article/swedish-national-airway-register-snar-development-design-and-utility-date - 2025-10-15
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 in this process are healthc
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 relation to bacterial findings in
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 Cox regression models were
