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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 - 2025-11-08

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 - 2025-11-08

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 - 2025-11-08

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 - 2025-11-08

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 - 2025-11-08

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 - 2025-11-08

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 - 2025-11-08

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 - 2025-11-08

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 - 2025-11-08

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 - 2025-11-08

Today, FORMAS announced the urgent grants for 2018 Last day of application: Any time during the year, until 08/11/2018Day of decision: Continuously during the year, last day of decision is 15/01/2019An urgent grant application can be submitted for any scientific discipline; the humanities, natural sciences, social sciences and technological sciences, and may also include interdisciplinary approach

https://www.lupop.lu.se/article/formas-urgent-grants - 2025-11-08

Hur bör den svenska forskningspolitiken utformas för att stärka forskningen, bidra till att lösa dagens samhällsutmaningar och skapa ny kunskap för en klokare värld? Se en inspelning från Vetenskapsrådets konferens på Stockholm Waterfront 20 november. Läs mer här.

https://www.lupop.lu.se/article/forskningspolitiska-dagen-2019-0 - 2025-11-08

Work histories generally cover all jobs held for ≥1 year. However, it may be time and cost prohibitive to conduct a detailed exposure assessment for each such job. While disregarding short-term jobs can reduce the assessment burden, this can be problematic if those jobs contribute important exposure information towards understanding disease aetiology. New publication in Annals of work exposure and

https://www.lupop.lu.se/article/characterizing-short-term-jobs-population-based-study - 2025-11-08

There is a growing interest in using health care (HC) data to produce epidemiological surveillance indicators such as incidence. Typically, in the field of cancer, incidence is provided by local cancer registries which, in many countries, do not cover the whole territory; using proxy measures from available nationwide HC databases would appear to be a suitable approach to fill this gap. However, i

https://www.lupop.lu.se/article/sound-use-health-care-data-epidemiology-evaluation-calibration-model-count-data-application - 2025-11-08

The association between socio-economic position and health is believed to be mediated, in part, by psycho-social comparison of one’s situation with that of others. But with whom? Possibilities include family, friends, elites, or even those in other countries or in previous times. So far, there has been almost no research on whether the reference point matters. New publication in International Jour

https://www.lupop.lu.se/article/compared-whom-reference-groups-socio-economic-comparisons-and-self-reported-health-34-countries - 2025-11-08

The European Society of Cardiology (ESC) EURObservational Research Programme (EORP) European Endocarditis (EURO-ENDO) registry aims to study the care and outcomes of patients diagnosed with infective endocarditis (IE) and compare findings with recommendations from the 2015 ESC Clinical Practice Guidelines for the management of IE and data from the 2001 Euro Heart Survey. New publication in Europea

https://www.lupop.lu.se/article/esc-eorp-euro-endo-european-infective-endocarditis-registry - 2025-11-08

Obesity defined as increased BMI is commonly associated with higher revision rates following total knee arthroplasty (TKA). We examined the effect of BMI on the rate of revision after TKA, for both infection and other reasons, and analyzed weight and height separately to provide better understanding of the risk profile. New publication in Journal Acta Orthopaedica

https://www.lupop.lu.se/article/weight-and-height-separated-provide-better-understanding-bmi-risk-revision-after-total-knee - 2025-11-08

In recent years, epidemiologists have increasingly sought to employ genetic data to identify ‘causal’ relationships between exposures of interest and various endpoints – an instrumental variable approach sometimes termed Mendelian randomization. However, this approach is subject to all of the limitations of instrumental variable analysis and to several limitations specific to its genetic underpinn

https://www.lupop.lu.se/article/genetic-instrumental-variable-analysis-time-call-mendelian-randomization-what-it-example-alcohol-and - 2025-11-08

Physical activity might reduce the risk of developing dementia. However, it is still unclear whether the protective effect differs depending on the subtype of dementia. We aimed to investigate if midlife physical activity affects the development of vascular dementia (VaD) and Alzheimer’s disease (AD) differently in two large study populations with different designs. New publication in Alzheimer´s

https://www.lupop.lu.se/article/midlife-physical-activity-associated-lower-incidence-vascular-dementia-not-alzheimers-disease - 2025-11-08

A relative risk estimate which relates an exposure to risk of disease will tend to be estimated too close to unity if that exposure is subject to random measurement error or intra-subject variability. New publication in International Journal of Epidemiology

https://www.lupop.lu.se/article/how-independent-are-independent-effects-relative-risk-estimation-when-correlated-exposures-are - 2025-11-08