Clinical registries that monitor and review outcomes for patients with cystic fibrosis have existed internationally for many decades. However, their purpose continues to evolve and now includes the capability to support clinical effectiveness research, clinical trials and Phase IV studies, and international data comparisons and projects. Read the paper at https://www.sciencedirect.com/science/arti

https://www.lupop.lu.se/article/redesign-australian-cystic-fibrosis-data-registry-multidisciplinary-collaboration - 2025-09-07

Photo from Manchester Metropolitan University The PARTNER project (Paediatric Rare Tumours Network - European Registry) was launched in 2016. PARTNER aims to create a European Registry dedicated to children and adolescents with very rare tumors (VRT). It links existing national registries and provides a registry for those countries in which a VRT registry has not yet been created. Read the paper a

https://www.lupop.lu.se/article/european-paediatric-rare-tumours-network-european-registry-partner-project-very-rare-tumors-children - 2025-09-07

Photo: Pixabay / Gerd Altmann Systems models, which by design aim to capture multi-level complexity, are a natural choice of tool for bridging the divide between social epidemiology and causal inference. In this commentary, we discuss the potential uses of complex systems models for improving our understanding of quantitative causal effects in social epidemiology. Read the essay at http://dx.doi.o

https://www.lupop.lu.se/article/complex-systems-models-causal-inference-social-epidemiology - 2025-09-07

In this paper, we describe a newly developed estimation method that fits the additive hazards models to general two-phase sampling studies along with the R package addhazard that implements it. Read the paper at https://link.springer.com/article/10.1007/s10654-021-00739-3

https://www.lupop.lu.se/article/estimating-hazard-rate-difference-case-cohort-studies - 2025-09-07

We sought to understand why researchers do or do not regularly use DAGs by surveying practicing epidemiologists and medical researchers on their knowledge, level of interest, attitudes, and practices towards the use of causal graphs in applied epidemiology and health research. Read the paper at https://link.springer.com/article/10.1007%2Fs10654-021-00771-3

https://www.lupop.lu.se/article/assessing-knowledge-attitudes-and-practices-towards-causal-directed-acyclic-graphs-qualitative - 2025-09-07

Photo: Pixabay / Arek Socha We propose to extend our previous approach for the joint analysis of marginal summary statistics to incorporate prior information via a hierarchical model (hJAM). Read the paper at https://doi.org/10.1093/aje/kwaa287

https://www.lupop.lu.se/article/hierarchical-approach-using-marginal-summary-statistics-multiple-intermediates-mendelian - 2025-09-07

Photo: Pixabay / Ben Kerckx The VALIDATE-SWEDEHEART trial was a registry-based randomized trial comparing bivalirudin and heparin in patients with acute myocardial infarction undergoing percutaneous coronary intervention. It showed no differences in mortality at 30 or 180 days. This study examines how well the trial population results may generalize to the population of all screened patients with

https://www.lupop.lu.se/article/assessing-external-validity-validate-swedeheart-trial - 2025-09-07

Photo: Pixabay / Ralf Kunze Aims: To estimate the prevalence of parental substance use disorder (PSUD) in the general population based on young adults' reports adjusted for non-participation using register-based indicators of PSUD. Read the paper at https://europepmc.org/article/med/33878599

https://www.lupop.lu.se/article/estimating-perceived-parental-substance-use-disorder-using-register-data-adjust-non-participation - 2025-09-07

A large cohort, consisting of versatile individual-level phenotype and genotype data, can be constructed by integrating data from several biobanks and health data registers in Finland. Co-operation with biobanks is straightforward. However, long time periods need to be reserved when biobank resources are linked with national register data. Read the paper at https://journals.sagepub.com/doi/full/10

https://www.lupop.lu.se/article/integrating-data-multiple-finnish-biobanks-and-national-health-care-registers-retrospective-studies - 2025-09-07

Photo: flickr / agilemktg1 About 30 million people in the EU and USA, respectively, suffer from a rare disease. Driven by European legislative requirements, national strategies for the improvement of care in rare diseases are being developed. Read the paper at https://ojrd.biomedcentral.com/articles/10.1186/s13023-021-01831-3

https://www.lupop.lu.se/article/how-design-registry-undiagnosed-patients-framework-rare-disease-diagnosis-suggestions-software-data - 2025-09-07

Photo: Pixabay / Colin Behrens In a prospective study, we sought to determine acceptability of linkage of administrative and clinical trial data among Canadian patients and Research Ethics Boards (REBs). The goal is to develop a more harmonized approach to data, with potential to improve clinical trial conduct through enhanced data quality collected at reduced cost and inconvenience for patients.

https://www.lupop.lu.se/article/canadian-prospective-study-linkage-randomized-clinical-trial-cancer-and-mortality-registry-data - 2025-09-07

Du kommer att samla in och ställa samman kunskap om forskningsdata och dess hantering i biobankskohorter, såväl i Umeå som nationellt. Målet är att peka ut förbättringsområden, för förbättrade och förenklade flöden för forskningen. Parallellt kommer du att arbeta med att ge konkret stöd till forskare inom olika biobanksprojekt. Läs mer och ansök på https://www.umu.se/jobba-hos-oss/lediga-jobb/fors

https://www.lupop.lu.se/article/umea-universitet-soker-forskningssamordnare-med-fokus-pa-processer-biobankers-forskningsdata - 2025-09-07

Photo: Pixabay / Leo2014 Detta forskningsprojekt syftar till att undersöka om det finns patientgrupper som behöver extra mycket resurser, och vad som i så fall skiljer dessa patienter från patienter som inte behöver lika stora resurser. Läs mer om studien på https://www.lupop.lu.se/resursfordelning-och-utfall-inom-intensivvarden

https://www.lupop.lu.se/article/ny-studie-resursfordelning-och-utfall-inom-intensivvarden - 2025-09-07

Photo: Pixabay / Gerd Altmann Vi avser i detta projekt undersöka om vi med maskininlärning (artificiell intelligens, AI) kan träna en dator att känna igen mönster i akutpatienters data, såsom tidigare sjukdomar, läkemedelsanvändning, undersökningsresultat och sociala faktorer, för att sedan kunna förutsäga vilken eller vilka av de vanligaste sjukdomarna patienten har, som orsakar andningssvårighet

https://www.lupop.lu.se/article/ny-studie-maskininlarning-battre-diagnostik-och-behandling-av-vuxna-patienter-som-soker-sjukvard-pa - 2025-09-07

Photo: Pixabay / Brian Merrill We are looking for an assistant researcher in Epidemiology for work that is linked to a thematic collaborative initiative on improved pandemic preparedness that has received internal funding from Lund University 2021 – 2024. The initiative is a truly interdisciplinary collaboration for research and infrastructure development that involves Lund university, Umeå univer

https://www.lupop.lu.se/article/new-position-assistant-researcher-epidemiology - 2025-09-07

Photo: Pixabay / Sasin Tipchai Tonsil surgery is a daily procedure at Ear, Nose and Throat (ENT) departments as well as ENT practices. Despite national tonsil guidelines in Denmark, no national survey has been introduced. Read the full paper here.

https://www.lupop.lu.se/article/first-experiences-implementation-swedish-tonsil-register-denmark - 2025-09-07

Photo: Wikimedia Commons / Søren Sigfusson The Nordic countries are Denmark, Finland, Iceland, Norway, and Sweden and comprise a total population of approximately 27 million. The countries provide unique opportunities for joint health registry-based research in large populations with long and complete follow-up, facilitated by shared features, such as the tax-funded and public health care systems,

https://www.lupop.lu.se/article/nordic-health-registry-based-research-review-health-care-systems-and-key-registries-0 - 2025-09-07

Image from pixabay / pearson0612 En studie rörande effekter av åldersspecifika rekommendationer i samband med Covid-19-pandemin, i vilken flera forskare från Lunds universitet medverkat, har nyligen publicerats "pre-print" och i samband med detta uppmärksammats i diverse media. Preprint-artikeln finns att läsa på https://doi.org/10.1101/2021.07.22.21260973. En intervju med en av medförfattarna (To

https://www.lupop.lu.se/article/covid-forskning-fran-lunds-universitet - 2025-09-07

Photo: Pixabay / Arek Socha Quality improvement programs and clinical trial research experienced disruption due to the coronavirus disease 2019 (COVID-19) pandemic. Vascular registries showed an immediate impact with significant declines in second-quarter vascular procedure volumes witnessed across Europe and the United States. To better understand the magnitude and impact of the pandemic, organiz

https://www.lupop.lu.se/article/impact-covid-19-pandemic-vascular-registries-and-clinical-trials - 2025-09-07

Ny registerstudie från Lunds Universitet Läs Aftonbladets rapportering här, eller gå direkt till publikationen i Plos one.

https://www.lupop.lu.se/article/unga-som-ater-p-piller-kan-ma-samre-andra - 2025-09-07