Published 11 December 2020 International patient registries are of particular importance for rare disorders, as they may contribute to overcome the lack of knowledge derived from low number of patients and limited awareness of these diseases, and help to learn more about their geographical or population-based specificities, which is relevant for research purposes and for promoting better standards

https://www.lupop.lu.se/article/creation-and-implementation-european-registry-patients-mcardle-disease-and-other-muscle-glycogenoses - 2025-03-19

Published 11 December 2020 Dominant mutations in valosin-containing protein (VCP) gene cause an adult onset inclusion body myopathy, Paget’s disease of bone, and frontotemporal dementia also termed multisystem proteinopathy (MSP). The genotype-phenotype relationships in VCP-related MSP are still being defined; in order to understand this better, we investigated the phenotypic diversity and pattern

https://www.lupop.lu.se/article/phenotypic-diversity-international-cure-vcp-disease-registry - 2025-03-19

Published 12 December 2020 The COVID-19 pandemic may have severe impact on mental health, and concerns have been raised about potentially increased online behavior and possibly increased gambling problems, such as in sports bettors at risk of transfer to even riskier forms of gambling during sports lock-down. Given the need for objective data about gambling behavior during the pandemic, the presen

https://www.lupop.lu.se/article/impact-covid-19-online-gambling-general-population-survey-during-pandemic - 2025-03-19

Published 12 December 2020 Survival data for pancreatic cancer are usually based on actuarial calculations and actual long-term survival rates are rarely reported. Here we use population-level data from the Surveillance, Epidemiology, and End Results program for patients with microscopically confirmed pancreatic ductal adenocarcinoma diagnosed from 1975 to 2011. A total of 84,275 patients with at

https://www.lupop.lu.se/article/actual-5-year-survivors-pancreatic-ductal-adenocarcinoma-based-real-world-data - 2025-03-19

Published 13 December 2020 The aim of this study was to investigate the appearance of a disturbed oropharyngeal microbiota during hospitalization and explore the patient characteristics that maybe associated with such a disturbance. Oropharyngeal swabs were collected from 134 patients at hospital admission and every 3–4 days thereafter. The samples were cultivated to determine the presence of a di

https://www.lupop.lu.se/article/disturbance-oropharyngeal-microbiota-relation-antibiotic-and-proton-pump-inhibitor-medication-and - 2025-03-19

Published 13 December 2020 Only one fifth of children aged 11–17 years are physically active for 60 min (min)/day. As physical activity (PA) levels track from childhood to adulthood, it is important to establish healthy PA behavior early in life. This study aims to evaluate whether daily school PA is associated with objectively measured PA independently of other socioecological factors. This study

https://www.lupop.lu.se/article/daily-school-physical-activity-associated-higher-level-physical-activity-independently-other - 2025-03-19

Published 14 December 2020 The Swedish Quality Register for Inflammatory Bowel Disease (SWIBREG) contains clinical data for the study of inflammatory bowel disease (IBD). The Epidemiology Strengthened by histoPathology Reports in Sweden (ESPRESSO) cohort was recently established for the study of gastrointestinal histopathology. We aimed to develop and validate a histology score from ESPRESSO using

https://www.lupop.lu.se/article/novel-method-quantifying-intestinal-inflammatory-burden-inflammatory-bowel-disease-using-register - 2025-03-19

Published 14 December 2020 Read more at Current national hand surgery registries worldwide - PubMed (nih.gov)

https://www.lupop.lu.se/article/current-national-hand-surgery-registries-worldwide - 2025-03-19

Published 15 December 2020 We are living in a multi-omics era of systems epidemiology. Quantitative high-throughput metabolomics and lipidomics have resulted in hundreds of molecular measures for up to tens of thousands of people in multiple cohorts and biobanks. Extensive and complex data create significant challenges for statistical analyses. It would therefore be beneficial, not only for omics

https://www.lupop.lu.se/article/epimetal-open-source-graphical-web-browser-tool-easy-statistical-analyses-epidemiology-and - 2025-03-19

Published 15 December 2020 Read more at EuroHeart: European Unified Registries On Heart Care Evaluation and Randomized Trials - PubMed (nih.gov)

https://www.lupop.lu.se/article/euroheart-european-unified-registries-heart-care-evaluation-and-randomized-trials-0 - 2025-03-19

Published 16 December 2020 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 - 2025-03-19

Published 16 December 2020 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—

https://www.lupop.lu.se/article/recognizing-reporting-and-reducing-data-curation-debt-cohort-studies - 2025-03-19

Published 17 December 2020 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 Un

https://www.lupop.lu.se/article/underreporting-5-year-tetanus-diphtheria-pertussis-and-polio-booster-vaccination-danish-vaccination - 2025-03-19

Published 17 December 2020 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 qu

https://www.lupop.lu.se/article/use-online-knowledge-base-primary-health-care-and-correlation-health-care-quality-observational - 2025-03-19

Published 18 December 2020 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 - 2025-03-19

Published 18 December 2020 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 - 2025-03-19

Published 19 December 2020 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 pro

https://www.lupop.lu.se/article/survey-assess-need-national-registry-track-physician-suicide - 2025-03-19

Published 19 December 2020 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 Pulmona

https://www.lupop.lu.se/article/rational-and-design-china-pulmonary-thromboembolism-registry-study-cures-prospective-multicenter - 2025-03-19

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 - 2025-03-19

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 - 2025-03-19