Published 21 October 2020 Independent disease registries for pre-and post-approval of novel treatments for rare diseases are increasingly important for healthcare professionals, patients, regulators and the pharmaceutical industry. Current registries for rare diseases to evaluate orphan drugs are mainly set up and owned by the pharmaceutical industry which leads to unacceptable conflicts of intere

https://www.lupop.lu.se/article/registries-orphan-drugs-generating-evidence-or-marketing-tools - 2025-07-17

Published 21 March 2018 Ragnar Söderbergs stiftelse finansierar projekt vid Stockholms och Lunds Universitet En framgångsrik digitalisering resulterar i ett unikt dataset som kastar nytt ljus på svensk industrihistoria. Planen är att göra datasetet offentligt, och bedömningen är att det kan bli internationellt uppmärksammat och användas i historiska studier av industrialisering.Läs mer här.

https://www.lupop.lu.se/article/projekt-att-digitalisera-svensk-industridata-beviljas-13-miljoner-kronor - 2025-07-17

Published 21 October 2020 Recruitment for Alzheimer's disease (AD)-focused studies, particularly prevention studies, is challenging due to the public's lack of awareness about study opportunities coupled with studies' inclusion and exclusion criteria, resulting in a high screen fail rate. Read more at https://pubmed.ncbi.nlm.nih.gov/32920626/

https://www.lupop.lu.se/article/alzheimers-prevention-registry-large-internet-based-participant-recruitment-registry-accelerate - 2025-07-17

Published 22 October 2020 Hypertension (HTN) has become a major public health problem which can cause serious complications when it is not well-controlled. Prevention and effective care of HTN require a population-based registry. Thus, establishing this registry can be used to collect comprehensive, timely, and reliable data on epidemiology cases. The aim is to create a registry for the collection

https://www.lupop.lu.se/article/improving-hypertension-surveillance-data-management-prospective-data-requirements-implementation - 2025-07-17

Published 22 October 2020 The risk of complications and medical consequences of type 2 diabetes are well known. Hospital costs have been identified as a key driver of total costs in studies of the economic burden of type 2 diabetes. Less evidence has been generated on the impact of individual diabetic complications on the overall societal burden. The objective of this study was to analyse costs of

https://www.lupop.lu.se/article/costs-diabetes-complications-hospital-based-care-and-absence-work-392200-people-type-2-diabetes-and - 2025-07-17

Published 23 October 2020 Non-Western immigrants to Europe are at high risk for type 2 diabetes. In this nationwide study including incident cases of type 2 diabetes, the aim was to compare all-cause mortality (ACM) and cause-specific mortality (CSM) rates in first- and second-generation immigrants with native Swedes. Read more at https://pubmed.ncbi.nlm.nih.gov/32979073/

https://www.lupop.lu.se/article/mortality-first-and-second-generation-immigrants-sweden-diagnosed-type-2-diabetes-10-year-nationwide - 2025-07-17

Published 23 October 2020 Several prediction models for falls/near falls in Parkinson’s disease (PD) have been proposed. However, longitudinal predictors of frequency of falls/near falls are poorly investigated. Therefore, we aimed to identify short- and long-term predictors of the number of falls/near falls in PD. Read more at https://link.springer.com/article/10.1007/s00415-020-10234-6

https://www.lupop.lu.se/article/longitudinal-prediction-falls-and-near-falls-frequencies-parkinsons-disease-prospective-cohort-study - 2025-07-17

Published 24 October 2020 The objective was to describe the epidemiology, bacteriology, clinical presentation, risk factors for endocarditis (IE), diagnostic workup, and outcome of patients with bacteremia caused by the non-influenzae Haemophilus, Aggregatibacter, Cardiobacterium, Eikenella, and Kingella genera (HACEK). A retrospective population-based cohort of patients with bacteremia collected

https://www.lupop.lu.se/article/epidemiology-bacteriology-and-clinical-characteristics-hacek-bacteremia-and-endocarditis-population - 2025-07-17

Published 24 October 2020 Higher socioeconomic status (SES) is associated with lower mortality, and this correlation has been confirmed using different indicators across several geographical settings. Nevertheless, the timing of the emergence of the SES gradient remains unclear. We used individual-level longitudinal data for a regional population in southern Sweden covering the period between 1813

https://www.lupop.lu.se/article/ses-inequalities-cause-specific-adult-mortality-study-long-term-trends-using-longitudinal-individual - 2025-07-17

Published 28 July 2020 Analyses were based on Swedish case–control data comprising incident cases of LADA (n = 465) and T2D (n = 1528) with matched, population-based controls (n = 1789; n = 1553 in genetic analyses). Multivariable-adjusted ORs in relation to self-reported processed and unprocessed red meat intake were estimated by conditional logistic regression models. Attributable proportion (AP

https://www.lupop.lu.se/article/consumption-red-meat-genetic-susceptibility-and-risk-lada-and-type-2-diabetes - 2025-07-17

Published 29 July 2020 The authors assessed the effect of incorporating the timing of cancer diagnosis events into the assessment of familial risks of breast cancer in first‐degree and second‐degree relatives in a nationwide cohort study of 5,099,172 women (follow‐up was between 1958‐2015). Family history was assessed using 3 approaches: 1) as a static variable (ever having a relative with breast

https://www.lupop.lu.se/article/familial-risk-breast-cancer-dynamic-accumulative-and-static-definitions-family-history - 2025-07-17

Published 29 July 2020 Ulnar nerve entrapment at the elbow (UNE) is overrepresented in patients with diabetes, but the outcome of surgery is unknown. We aimed to evaluate patient-reported outcome in patients with and without diabetes, and to assess potential sex differences and compare surgical treatment methods. Data on patients operated for UNE (2010-2016, n = 1354) from the Swedish National Reg

https://www.lupop.lu.se/article/ulnar-nerve-entrapment-diabetes-patient-reported-outcome-after-surgery-national-quality-registries - 2025-07-17

Published 28 July 2020 Nyhetsbrev från Svensk nationell datatjänst juni 2020. Läs mer här.

https://www.lupop.lu.se/article/snd-natverksnytt-0 - 2025-07-17

Published 30 July 2020 The recommendations in the document are aimed at helping policymakers and funders to maximise timely, quality data sharing and appropriate responses in future health emergencies. The Research Data Alliance (RDA) COVID-19 Working Group members bring various, global expertise to develop a body of work that comprises how data from multiple disciplines inform response to a pande

https://www.lupop.lu.se/article/rda-covid-19-recommendations-and-guidelines-data-sharing - 2025-07-17

Published 30 July 2020 In this review, we explain statistical concepts targeted towards patients, clinicians and healthcare professionals that summarize cancer patient survival under the assumption that other causes of death exist. Specifically, we explain the appropriate use, interpretation and assumptions behind statistical methods for competing risks, loss in life expectancy due to cancer and c

https://www.lupop.lu.se/article/cancer-survival-statistics-patients-and-healthcare-professionals-tutorial-real-world-data-analysis - 2025-07-17

Published 31 July 2020 Estimates from Mendelian randomization studies of unrelated individuals can be biased due to uncontrolled confounding from familial effects. Here we describe methods for within-family Mendelian randomization analyses and use simulation studies to show that family-based analyses can reduce such biases. Read more here.

https://www.lupop.lu.se/article/avoiding-dynastic-assortative-mating-and-population-stratification-biases-mendelian-randomization - 2025-07-17

Published 1 August 2020 McMaster GRADE Centre researchers developed ‘health outcome descriptors’ for standardizing descriptions of health outcomes and overcoming these problems to support the European Commission Initiative on Breast Cancer (ECIBC) Guideline Development Group (GDG). We aimed to determine which aspects of the development, content, and use of health outcome descriptors were valuable

https://www.lupop.lu.se/article/development-and-use-health-outcome-descriptors-guideline-development-case-study - 2025-07-17

Published 2 August 2020 Objectives: To investigate use of data from a clinical quality registry for cardiac rehabilitation in Denmark, considering the extent to which data are used for local quality improvement and what facilitates the use of these data, with a particular focus on whether there are differences between frontline staff and managers. Read more here.

https://www.lupop.lu.se/article/facilitators-using-data-quality-registry-local-quality-improvement-work-cross-sectional-survey-0 - 2025-07-17

Published 3 August 2020 Combining National Quality Registries (NQRs) with existing National Health Registries (NHRs) might make it possible to get a wider picture of older adults health situation. The aim was to examine the feasibility of aggregating data across different NQRs and existing NHRs to explore the possibility to investigate trajectories and patterns of disease and care, specifically fo

https://www.lupop.lu.se/article/using-aggregated-data-swedish-national-quality-registries-tools-describe-health-conditions-older - 2025-07-17

Published 30 July 2020 Forte har påbörjat en översyn av ett antal mindre bidragsformer. Under 2020 sker därför ingen utlysning av nätverksbidrag, tidskriftsbidrag, konferensbidrag och gästforskarbidrag. Läs mer på https://forte.se/nyhet/ingen-utlysning-av-natverksbidrag-gastforskarbid….

https://www.lupop.lu.se/article/forte-ingen-utlysning-av-natverksbidrag-gastforskarbidrag-tidskriftsbidrag-och-konferensbidrag-2020 - 2025-07-17