Published 15 December 2019 This is a multicentre, longitudinal, observational cohort study that includes (1) patients with a definite ACM diagnosis, (2) at-risk relatives of ACM patients, and (3) ACM-associated mutation carriers. At baseline and every follow-up visit, a medical history as well information regarding (non-)invasive tests is collected (e. g. electrocardiograms, Holter recordings, ima

https://www.lupop.lu.se/article/netherlands-arrhythmogenic-cardiomyopathy-registry-design-and-status-update - 2025-07-05

Published 15 December 2019 The purpose of the present study was to assess the agreement between self‐reported use of sleep medications and tranquilizers and dispensed hypnotics and anxiolytics. New publication in PDS

https://www.lupop.lu.se/article/agreement-between-self-reported-and-registry-based-use-sleep-medications-and-tranquilizers - 2025-07-05

Published 16 December 2019 The purpose of this paper is to understand what role researchers assign to online representations on the new digital communication sites that have emerged, such as Academia, ResearchGate or Mendeley. How are researchers’ online presentations created, managed, accessed and, more generally, viewed by academic researchers themselves? And how are expectations of the academic

https://www.lupop.lu.se/article/researchers-online-visibility-tensions-visibility-trust-and-reputation-0 - 2025-07-05

Published 16 December 2019 The promise of clinical registries lies in their ability to guide clinical practice with valid, specific, and high-quality information. While registries vary in their design and purpose, most are structured systems that compile organized clinical data for a given disease or groups of diseases. Participating institutions send information on patients to central repositorie

https://www.lupop.lu.se/article/leveraging-full-potential-clinical-registries - 2025-07-05

Published 17 December 2019 Patterns and determinants of long‐term oral corticosteroid (OCS) use in asthma and related morbidity and mortality are not well‐described. In a nationwide asthma cohort in Sweden, we evaluated the patterns and determinants of OCS use and risks of OCS‐related morbidities and mortality. New publication in Allergy

https://www.lupop.lu.se/article/oral-corticosteroid-use-morbidity-and-mortality-asthma-nationwide-prospective-cohort-study-sweden - 2025-07-05

Published 17 December 2019 Over the last several years, there has been increasing awareness around the unique challenges faced by adolescent and young adult (AYA) cancer patients. More cancer centers across the United States are introducing AYA-specific programs to help improve outcomes for these patients. However, given the nature of the United States health care system, there is little ability t

https://www.lupop.lu.se/article/argument-adolescent-and-young-adult-cancer-registry-one-model - 2025-07-05

Published 18 December 2019 Risk factors and consequences of asthma can be studied by using validated questionnaires. The overall objective of this study was to assess the agreement of parental-reported asthma-related questions regarding their children against Swedish health care registers. New publication in Pharmacoepidemiol Drug Saf.

https://www.lupop.lu.se/article/agreement-between-asthma-questionnaire-and-health-care-register-data-0 - 2025-07-05

Published 18 December 2019 New publication in Rev Esp Cardiol

https://www.lupop.lu.se/article/spanish-cardiovascular-imaging-registry-first-official-report-spanish-society-cardiology-working - 2025-07-05

Published 19 December 2019 New publication in Eur Neuropsychopharmacol

https://www.lupop.lu.se/article/need-paediatric-registries-assess-long-term-brain-effects-psychotropic-medications-case-bipolar - 2025-07-05

Published 19 December 2019 High-quality biobanking within routine health services, through the use of existing health-care practices and infrastructure, with respect to safety and integrity of patients in line with the Swedish Biobank Act, enables large-scale collection of biological material at reasonable costs. Complementing the extensive information on myocardial infarction patients from a nati

https://www.lupop.lu.se/article/biobank-linked-swedeheart-quality-registry-routine-blood-sample-collection-opens-new-opportunities - 2025-07-05

Published 20 December 2019 Spatial epidemiological analyses primarily depend on spatially-indexed medical records. Some countries have devised ways of capturing patient-specific spatial details using ZIP codes, postcodes or personal numbers, which are geocoded. However, for most resource-constrained African countries, the absence of a means to capture patient resident location as well as inexisten

https://www.lupop.lu.se/article/establishing-spatially-enabled-health-registry-systems-using-implicit-spatial-data-pools-case-study - 2025-07-05

Published 20 December 2019 In summary, the authors have proposed progressive ideas which could improve surveillance however, in our view, it is likely that many programs will not have the political and medical support needed for implementation with the exception of mortality outcomes. New publication in European Journal of Medical Genetics

https://www.lupop.lu.se/article/triple-surveillance-future-birth-defect-registries - 2025-07-05

Published 21 December 2019 We herein outline the rationale for a Swedish cohort consortium, aiming to facilitate greater use of Swedish cohorts for world-class research. Coordination of all Swedish prospective population-based cohorts in a common infrastructure would enable more precise research findings and facilitate research on rare exposures and outcomes, leading to better utilization of study

https://www.lupop.lu.se/article/rationale-swedish-cohort-consortium-0 - 2025-07-05

Published 21 December 2019 PSYCOHORTS lays the foundation for complex examinations of psychiatric disorders that is based on compatible datasets, use of biobanks and multigenerational approach to risk factors, and extensive data on marginalization and inequality. New publication in Nordic Journal of Psychiatry

https://www.lupop.lu.se/article/finnish-psychiatric-birth-cohort-consortium-psycohorts-content-plans-and-perspectives - 2025-07-05

Published 22 December 2019 CandiReg provides an eCRF for invasive Candida infections that can be used for a variety of studies from cohort studies on attributable mortality to evaluations of guideline adherence, offering to the investigators of the 28 ECMM member countries the opportunity to document their cases of invasive Candida infection. CandiReg allows the monitoring of epidemiology of invas

https://www.lupop.lu.se/article/ecmm-candireg-ready-use-platform-outbreaks-and-epidemiological-studies - 2025-07-05

Published 22 December 2019 The Nordic Arthroplasty Register Association (NARA) was established in 2007 by arthroplasty register representatives from Sweden, Norway and Denmark with the overall aim to improve the quality of research and thereby enhance the possibility for quality improvement with arthroplasty surgery. Finland joined the NARA collaboration in 2010.NARA minimal hip, knee and shoulder

https://www.lupop.lu.se/article/benefits-collaboration-nordic-arthroplasty-register-association-0 - 2025-07-05

Published 23 December 2019 The STarT Back Screening Tool (SBT) identifies patients with low back pain (LBP) at risk of a worse prognosis of persistent disabling back pain, and thereby facilitates triage to appropriate treatment level. However, the SBT does not consider the pain distribution, which is a known predictor of chronic widespread pain (CWP). The aim of this study was to determine if scre

https://www.lupop.lu.se/article/start-back-screening-tool-and-pain-mannequin-improve-triage-individuals-low-back-pain-risk-worse - 2025-07-05

Published 23 December 2019 Radical prostatectomy (RP) is a common surgical procedure with a risk of postoperative erectile dysfunction and urinary incontinence. There is a need for data on RP as a basis for quality assurance and benchmarking. New publication in Journal of Surgical Oncology

https://www.lupop.lu.se/article/population-based-nationwide-registration-prostatectomies-sweden - 2025-07-05

Published 24 December 2019 Randomized clinical trials are the preferred study design to address key research questions about the benefits or harms of interventions. However, randomized trials of oxygen therapy are difficult to conduct and have limitations. The purpose of this article is to offer our view on the potential use of patient registries in the field of home oxygen in COPD as an alternati

https://www.lupop.lu.se/article/patient-registries-home-oxygen-research-and-evaluation-0 - 2025-07-05

Published 24 December 2019 The best-fit model predicted risk for DA in S2 as a function of the log of kilometres between S1 and S2 with parameter estimates (±95% confidence intervals) of 0.94 (0.92; 0.95). Prediction of DA included effects of cohabitation and an interaction of proximity and time since S1 registration with stronger effects of proximity early in the follow-up period. Proximity effec

https://www.lupop.lu.se/article/geographical-proximity-and-transmission-drug-abuse-among-siblings-evaluating-contagion-model-swedish - 2025-07-05