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The EOSC-Nordic project aims to facilitate the coordination of EOSC relevant initiatives within the Nordic and Baltic countries and exploit synergies to achieve greater harmonisation at policy and service provisioning across these countries, in compliance with EOSC agreed standards and practices. The project brings together a strong consortium of 24 complementary partners including e-Infrastructur

https://www.lupop.lu.se/article/d41-assessment-fair-uptake-among-regional-digital-repositories - 2025-10-25

The use of primary care electronic health records for research is abundant. The benefits gained from utilising such records lies in their size, longitudinal data collection and data quality. However, the use of such data to undertake high quality epidemiological studies, can lead to significant challenges particularly in dealing with misclassification, variation in coding and the significant effor

https://www.lupop.lu.se/article/data-extraction-epidemiological-research-dexter-novel-tool-automated-clinical-epidemiology-studies - 2025-10-25

Medical Education research suffers from several methodological limitations including too many single institution, small sample-sized studies, limited access to quality data, and insufficient institutional support. Increasing calls for medical education outcome data and quality improvement research have highlighted a critical need for uniformly clean and easily accessible data. Read more at https:/

https://www.lupop.lu.se/article/development-and-maintenance-medical-education-research-registry - 2025-10-25

In the Asian region, no international organ transplantation registry exists. Individual centers maintain their own database, or some countries developed a national registration system. To promote collaboration among Asian transplantation societies, the Asian Society of Transplantation (AST) has developed an international transplantation registry for the Asian countries that has been named as the A

https://www.lupop.lu.se/article/development-asian-transplant-registry-under-asian-society-transplantation - 2025-10-25

Clinical trials are the standard approach for evaluating new treatments, but may lack the power to assess rare outcomes. Trial results are also necessarily restricted to the population considered in the study. The availability of routinely collected healthcare data provides a source of information on the performance of treatments beyond that offered by clinical trials, but the analysis of this typ

https://www.lupop.lu.se/article/bayesian-hierarchical-approach-multiple-outcomes-routinely-collected-healthcare-data - 2025-10-25

Missing data due to loss to follow‐up or intercurrent events are unintended, but unfortunately inevitable in clinical trials. Since the true values of missing data are never known, it is necessary to assess the impact of untestable and unavoidable assumptions about any unobserved data in sensitivity analysis. This tutorial provides an overview of controlled multiple imputation (MI) techniques and

https://www.lupop.lu.se/article/sensitivity-analysis-clinical-trials-missing-continuous-outcome-data-using-controlled-multiple - 2025-10-25

With heighted interest in causal inference based on real‐world evidence, this empirical study sought to understand differences between the results of observational analyses and long‐term randomized clinical trials. We hypothesized that patients deemed “eligible” for clinical trials would follow a different survival trajectory from those deemed “ineligible” and that this factor could partially expl

https://www.lupop.lu.se/article/empirical-use-causal-inference-methods-evaluate-survival-differences-real-world-registry-vs-those - 2025-10-25

Bivariate observations of binary and ordinal data arise frequently and require a bivariate modeling approach in cases where one is interested in aspects of the marginal distributions as separate outcomes along with the association between the two. We consider methods for constructing such bivariate models based on latent variables with logistic marginals and propose a model based on the Ali‐Mikhai

https://www.lupop.lu.se/article/bivariate-logistic-regression-model-based-latent-variables - 2025-10-25

Many diseases such as cancer and heart diseases are heterogeneous and it is of great interest to study the disease risk specific to the subtypes in relation to genetic and environmental risk factors. However, due to logistic and cost reasons, the subtype information for the disease is missing for some subjects. In this article, we investigate methods for multinomial logistic regression with missin

https://www.lupop.lu.se/article/multinomial-logistic-regression-missing-outcome-data-application-cancer-subtypes - 2025-10-25

The aim of the study was to examine the Family and School Psychosocial Environment (FSPE) questionnaire in relation to a possible genotype-environment correlation and genetic mediation between the FSPE variables and personality variables, assessed by the Junior Eysenck Personality Questionnaire. A sample of 506 Swedish children aged 10-20 years from 253 families were recruited via the Swedish stat

https://www.lupop.lu.se/article/genotype-environment-correlation-and-its-relation-personality-twin-and-family-study - 2025-10-25

Missingness mechanism is in theory unverifiable based only on observed data. If there is a suspicion of missing not at random, researchers often perform a sensitivity analysis to evaluate the impact of various missingness mechanisms. In general, sensitivity analysis approaches require a full specification of the relationship between missing values and missingness probabilities. Read more at https:

https://www.lupop.lu.se/article/multiple-imputation-based-sensitivity-analysis-approach-data-subject-missing-not-random - 2025-10-25

As healthcare becomes increasingly complex, new methods are needed to identify weaknesses in the system that could lead to increased risk. Traditionally, the focus for patient safety is to study incident reports and adverse events, but that starting point has been contested with a new era of safety investigations: the analysis of everyday clinical work, and the resilient healthcare. Read more at h

https://www.lupop.lu.se/article/visualizing-healthcare-system-variability-and-resilience-longitudinal-study-patient-movements - 2025-10-25

Although patient-reported outcome measures (PROMs) are gaining increased interest in developing health care quality and are a useful tool in person-centered care, their use in routine care is still limited. The aim of this study is to describe the implementation and initial results of PROMs via the Swedish Renal Registry (SRR) on a national level. Read more at https://pubmed.ncbi.nlm.nih.gov/32699

https://www.lupop.lu.se/article/patient-reported-outcome-measures-new-application-swedish-renal-registry-health-related-quality-life - 2025-10-25

Parents are a crucial part in the care of children with pediatric cataract. The aim of this study was to explore and explain sense of coherence, family self-efficacy, perceived social support, fatigue and parent reported experiences (PREM), in order to improve clinical care. Questionnaires were sent to the parents of children registered in the Swedish national Pediatric Cataract Register, PECARE,

https://www.lupop.lu.se/article/parents-reported-experiences-when-having-child-cataract-important-aspects-self-management-obtained - 2025-10-25

Det övergripande syftet med projektet är att kartlägga våldsbrottstrenden i Region Skåne, utforska vilka skador som offren av våldsbrott får och ifall de avlider, vad dödsorsaken är. Syftet är även att titta på vilka behandlingar som dessa offer fått inom akutsjukvården samt undersöka vilka karakteristika som offer för våldsbrott har. Uppgifter om forskningspersonens födelseland kommer att inhämta

https://www.lupop.lu.se/article/valdsbrott-i-skane - 2025-10-25

Dataanalys blir ett allt viktigare verktyg inom biologiforskning. Genom att titta på mönster i data från en stor mängd människor ökar kunskapen om hur olika individer fungerar och det leder till en allt mer skräddarsydd vård. Jacob Bergstedt är doktorand i reglerteknik vid Lunds Universitet. Läs mer om hans forskning här.

https://www.lupop.lu.se/article/sa-ska-sofistikerad-dataanalys-ge-oss-battre-vard - 2025-10-25

Population-based studies increasingly link task-based occupational questionnaire responses collected from subjects to exposure estimates via transparent, programmable decision rules. We reviewed recent applications and methodological developments of rule-based approaches. Read more at https://europepmc.org/article/med/31297745

https://www.lupop.lu.se/article/using-decision-rules-assess-occupational-exposure-population-based-studies - 2025-10-25

During the last 4 decades, registration of patients with primary immunodeficiencies (PID) has played an essential role in different aspects of these diseases worldwide including epidemiological indexes, policymaking, quality controls of care/life, facilitation of genetic studies and clinical trials as well as improving our understanding about the natural history of the disease and the immune syste

https://www.lupop.lu.se/article/global-systematic-review-primary-immunodeficiency-registries-0 - 2025-10-25

Public preregistration of study analysis plans (SAPs) is widely recognized for clinical trials, but adopted to a much lesser extent in observational studies. Registration of SAPs prior to analysis is encouraged to not only increase transparency and exactness but also to avoid positive finding bias and better standardize outcome modeling. Efforts to generally standardize outcome modeling, which can

https://www.lupop.lu.se/article/registering-study-analysis-plans-saps-dissecting-your-data-updating-and-standardizing-outcome - 2025-10-25

Research Infrastructures (RIs) are tools for scientific research that have received increased attention in science policy in Europe in recent years, including the launch of specific governance bodies and a structured process of prioritization and organization of RI projects in the making. But there is no commonly accepted definition of what RIs are, and the category is both very varied and lacks h

https://www.lupop.lu.se/article/research-infrastructures-europe-hype-and-field - 2025-10-25