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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 - 2025-12-08

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 - 2025-12-08

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. Unfortunately, not all systematic

https://www.lupop.lu.se/article/24-step-guide-how-design-conduct-and-successfully-publish-systematic-review-and-meta-analysis - 2025-12-08

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 - 2025-12-08

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 to ESC guidelines on preve

https://www.lupop.lu.se/article/cohort-profile-esc-eorp-chronic-ischemic-cardiovascular-disease-long-term-cicd-lt-registry - 2025-12-08

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 - 2025-12-08

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 publication in European Journa

https://www.lupop.lu.se/article/extending-inferences-randomized-trial-target-population - 2025-12-08

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 - 2025-12-08

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. New publication in European

https://www.lupop.lu.se/article/assessing-heterogeneous-effects-and-their-determinants-estimation-potential-outcomes - 2025-12-08

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 = 0.04). New publication in Worl

https://www.lupop.lu.se/article/establishing-multicentre-trauma-registry-india-evaluation-data-completeness - 2025-12-08

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 - 2025-12-08

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 registry and the Swedish N

https://www.lupop.lu.se/article/peritoneal-mesothelioma-sweden-population-based-study - 2025-12-08

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 inconsistency in goals, administration

https://www.lupop.lu.se/article/landscape-cardiovascular-device-registries-united-states - 2025-12-08

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 to the needs of the study, u

https://www.lupop.lu.se/article/lessons-learned-use-clinical-registry-data-multi-centre-prospective-study-pediatric-heart-network - 2025-12-08

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 again, can be used to correc

https://www.lupop.lu.se/article/reflection-modern-methods-calculating-sample-size-repeatability-sub-study-correct-measurement-error - 2025-12-08

Recently, King et al.1 assessed the effect of disability on mental health through bullying in adolescents using a causal mediation analysis method developed by Valeri and VanderWeele2 in which exposure–mediator interactions are allowed. In the latter method, one can only handle time-fixed exposure and mediator, and, for this reason, the authors only used the exposure in wave 5 and mediator (and ou

https://www.lupop.lu.se/article/methodological-point-mediation-analysis - 2025-12-08

In healthcare, we have kept notes on people with diseases for over 4000 years. These have been a combination of subjective commentary and objective measurement. In the past 30 years recording data on patients has been systematised through disease registries and electronic patient records (EPR). We now have extensive registries in many diseases with robust cross-sectional and more importantly, long

https://www.lupop.lu.se/article/using-registries-research-cf-how-can-we-be-sure-about-outputs - 2025-12-08

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. New publication in emerald insight

https://www.lupop.lu.se/article/researchers-online-visibility-tensions-visibility-trust-and-reputation - 2025-12-08

With the most important stories from Nordic section of European Open Science Cloud (EOSC). Read more here.

https://www.lupop.lu.se/article/first-issue-eosc-nordic-newsletter - 2025-12-08

Bibsamkonsortiet tecknar ett läs- och publiceringsavtal med det vetenskapliga förlaget Elsevier. Det innebär att svenska forskare nu åter får tillgång till förlagets drygt två tusen tidskrifter. Dessutom kommer alla svenska forskningsartiklar kunna publiceras omedelbart öppet tillgängligt (open access). Läs mer här.

https://www.lupop.lu.se/article/nytt-avtal-med-elsevier - 2025-12-08