Published 21 November 2019 Over the past decade, several large registries of patients with idiopathic pulmonary fibrosis (IPF) have been established. These registries are collecting a wealth of longitudinal data on thousands of patients with this rare disease. The data collected in these registries will be complementary to data collected in clinical trials because the patient populations studied i

https://www.lupop.lu.se/article/patient-registries-idiopathic-pulmonary-fibrosis - 2025-01-10

Published 22 November 2019 The Hamburg City Health Study (HCHS) is a large, prospective, long-term, population-based cohort study and a unique research platform and network to obtain substantial knowledge about several important risk and prognostic factors in major chronic diseases. A random sample of 45,000 participants between 45 and 74 years of age from the general population of Hamburg, German

https://www.lupop.lu.se/article/rationale-and-design-hamburg-city-health-study - 2025-01-10

Published 23 November 2019 Surgical quality registries are important tools for both performing research and improving clinical practice. The Swedish National Knee Ligament Registry (SNKLR) has collected patient-reported and surgical data on more than 90% of the anterior cruciate ligament (ACL) reconstructions in Sweden. There has year-by-year been an increasing number of publications using data fr

https://www.lupop.lu.se/article/should-garbage-garbage-out-be-replaced-little-little-out-questionnaire-response-rates-need-be - 2025-01-10

Published 23 November 2019 Self-selection into prospective cohort studies and loss to follow-up can cause biased exposure-outcome association estimates. Previous investigations illustrated that such biases can be small in large prospective cohort studies. The structural approach to selection bias shows that general statements about bias are not possible for studies that investigate multiple exposu

https://www.lupop.lu.se/article/bias-self-selection-and-loss-follow-prospective-cohort-studies - 2025-01-10

Published 24 November 2019 Comorbidity in stroke is common, but comprehensive reports are sparse. We describe prevalence of comorbidity and the prognostic impact on mortality and functional outcome in a large national ischemic stroke cohort. New publication in SAGE Journals

https://www.lupop.lu.se/article/long-term-outcome-after-ischemic-stroke-relation-comorbidity-observational-study-swedish-stroke - 2025-01-10

Published 24 November 2019 Multiple asthma patient registries have been established globally to provide valuable information on current clinical management, including treatment patterns, adherence, and the long-term outcomes that are important to patients, providers, and other decision makers. New publication in Immunology

https://www.lupop.lu.se/article/step-right-direction-harmonizing-measures-use-asthma-patient-registries - 2025-01-10

Published 25 November 2019 An increasing number of patients with central nervous system (CNS) tumor could survive to reproductive age. However, it is largely unknown whether the history of CNS tumor might affect pregnancy outcome. We aimed to explore the risk of being born preterm among children of CNS tumor survivors. New publication in International Journal of Cancer

https://www.lupop.lu.se/article/risk-being-born-preterm-offspring-survivors-childhood-or-adolescent-central-nervous-system-tumor - 2025-01-10

Published 25 November 2019 To inform evidence-based practice in health care, guidelines and policies require accurate identification, collation, and integration of all available evidence in a comprehensive, meaningful, and time-efficient manner. Approaches to evidence synthesis such as carefully conducted systematic reviews and meta-analyses are essential tools to summarize specific topics. Unfort

https://www.lupop.lu.se/article/24-step-guide-how-design-conduct-and-successfully-publish-systematic-review-and-meta-analysis - 2025-01-10

Published 23 November 2019 Nu finns ett nytt nyhetsbrev från SND att läsa online, med bland annat ledare av Monica Lassi vid LU. Läs nyhetsbrevet här.

https://www.lupop.lu.se/article/natverksnytt-fran-snd - 2025-01-10

Published 26 November 2019 The European Society of cardiology (ESC) EURObservational Research Programme (EORP) Chronic Ischemic Cardiovascular Disease registry Long Term (CICD) aims to study the clinical profile, treatment modalities and outcomes of patients diagnosed with CICD in a contemporary environment in order to assess whether these patients at high cardiovascular risk are treated according

https://www.lupop.lu.se/article/cohort-profile-esc-eorp-chronic-ischemic-cardiovascular-disease-long-term-cicd-lt-registry - 2025-01-10

Published 26 November 2019 Real-world data, such as patient registries, are important for health surveillance purposes and for informed decision making, especially in case of diseases whose rarity reduces the feasibility of trials and makes information difficult to collect. New publication in Value in Health

https://www.lupop.lu.se/article/value-rare-disease-registry-italian-region-friuli-venezia-giulia - 2025-01-10

Published 27 November 2019 In this issue, Weiss discusses “generalizing” inferences from randomized trials to other populations. However, he does not explicitly define what “generalizing” means, assumes that “generalizing” the results of a randomized trial has a single goal, and reduces generalizability to a binary subjective judgment—findings are either generalizable or not generalizable. New pub

https://www.lupop.lu.se/article/extending-inferences-randomized-trial-target-population - 2025-01-10

Published 27 November 2019 The influence of gender on bipolar disorder is controversial and it is unclear if inpatient care differs between men and women. Here, we investigate for gender differences in the inpatient length of stay for Swedes admitted for bipolar disorder and explore other factors that could explain any observed association. New publication in Journal of Affective Disorders

https://www.lupop.lu.se/article/gender-influence-bipolar-disorder-inpatient-length-stay-sweden-2005-2014-register-based-study - 2025-01-10

Published 28 November 2019 When analyzing effect heterogeneity, the researcher commonly opts for stratification or a regression model with interactions. While these methods provide valuable insights, their usefulness can be somewhat limited, since they typically fail to take into account heterogeneity with respect to many dimensions simultaneously, or give rise to models with complex appearances.

https://www.lupop.lu.se/article/assessing-heterogeneous-effects-and-their-determinants-estimation-potential-outcomes - 2025-01-10

Published 28 November 2019 Data on the 4466 trauma patients in the registry were analysed. Out of 59 variables, most (n = 51; 86.4%) were missing less than 20% of observations. There were 808 (18.1%) patients missing at least one of the first in-hospital physiological observations. Hospital death was associated with missing in-hospital physiological data (adjusted OR 1.4; 95% CI 1.02–2.01; p = 0.0

https://www.lupop.lu.se/article/establishing-multicentre-trauma-registry-india-evaluation-data-completeness - 2025-01-10

Published 29 November 2019 According to rough estimates, there are approximately 150,000 rare disease patients in Slovenia (out of a total population of 2 million). Despite the absence of accurate epidemiological data on their status, these figures reveal the great importance of this area for the Slovenian healthcare system. New publication in Orphanet Journal of Rare Diseases

https://www.lupop.lu.se/article/development-pilot-rare-disease-registry-focus-group-study-initial-steps-towards-establishment-rare - 2025-01-10

Published 29 November 2019 The study aim was to report survival and morbidity of all patients in Sweden with peritoneal mesothelioma treated with cytoreductive surgery (CRS) and hyperthermic intraperitoneal chemotherapy (HIPEC) as well as investigate whether the survival has increased on a population level since this treatment was nationalized 2011. Study data were collected from the Swedish HIPEC

https://www.lupop.lu.se/article/peritoneal-mesothelioma-sweden-population-based-study - 2025-01-10

Published 30 November 2019 Regulators increasingly rely on registries for decision making related to high‐risk medical devices in the United States. However, the limited uniform standards for registries may create substantial variability in registry implementation and utility to regulators. We surveyed the current landscape of US cardiovascular device registries and chart the extent of inconsisten

https://www.lupop.lu.se/article/landscape-cardiovascular-device-registries-united-states - 2025-01-10

Published 30 November 2019 Survey response rate was 98% (54/55). Overall, 57% perceived that using registry data saved research staff time in the current study, and 74% perceived that it would save time in future studies; 55% noted significant upfront time in developing a methodology for extracting registry data. Survey recommendations included simplifying data extraction processes and tailoring t

https://www.lupop.lu.se/article/lessons-learned-use-clinical-registry-data-multi-centre-prospective-study-pediatric-heart-network - 2025-01-10

Published 1 December 2019 Using a continuous exposure variable that is measured with random error in a univariable linear regression model leads to regression dilution bias: the observed association between the exposure and outcome is smaller than it would be if the true value of the exposure could be used. A repeatability sub-study, where a sample of study participants have their data measured ag

https://www.lupop.lu.se/article/reflection-modern-methods-calculating-sample-size-repeatability-sub-study-correct-measurement-error - 2025-01-10