Published 16 December 2019 The promise of clinical registries lies in their ability to guide clinical practice with valid, specific, and high-quality information. While registries vary in their design and purpose, most are structured systems that compile organized clinical data for a given disease or groups of diseases. Participating institutions send information on patients to central repositorie

https://www.lupop.lu.se/article/leveraging-full-potential-clinical-registries - 2025-02-06

Published 17 December 2019 Patterns and determinants of long‐term oral corticosteroid (OCS) use in asthma and related morbidity and mortality are not well‐described. In a nationwide asthma cohort in Sweden, we evaluated the patterns and determinants of OCS use and risks of OCS‐related morbidities and mortality. New publication in Allergy

https://www.lupop.lu.se/article/oral-corticosteroid-use-morbidity-and-mortality-asthma-nationwide-prospective-cohort-study-sweden - 2025-02-06

Published 17 December 2019 Over the last several years, there has been increasing awareness around the unique challenges faced by adolescent and young adult (AYA) cancer patients. More cancer centers across the United States are introducing AYA-specific programs to help improve outcomes for these patients. However, given the nature of the United States health care system, there is little ability t

https://www.lupop.lu.se/article/argument-adolescent-and-young-adult-cancer-registry-one-model - 2025-02-06

Published 18 December 2019 Risk factors and consequences of asthma can be studied by using validated questionnaires. The overall objective of this study was to assess the agreement of parental-reported asthma-related questions regarding their children against Swedish health care registers. New publication in Pharmacoepidemiol Drug Saf.

https://www.lupop.lu.se/article/agreement-between-asthma-questionnaire-and-health-care-register-data-0 - 2025-02-06

Published 18 December 2019 New publication in Rev Esp Cardiol

https://www.lupop.lu.se/article/spanish-cardiovascular-imaging-registry-first-official-report-spanish-society-cardiology-working - 2025-02-06

Published 19 December 2019 New publication in Eur Neuropsychopharmacol

https://www.lupop.lu.se/article/need-paediatric-registries-assess-long-term-brain-effects-psychotropic-medications-case-bipolar - 2025-02-06

Published 19 December 2019 High-quality biobanking within routine health services, through the use of existing health-care practices and infrastructure, with respect to safety and integrity of patients in line with the Swedish Biobank Act, enables large-scale collection of biological material at reasonable costs. Complementing the extensive information on myocardial infarction patients from a nati

https://www.lupop.lu.se/article/biobank-linked-swedeheart-quality-registry-routine-blood-sample-collection-opens-new-opportunities - 2025-02-06

Published 20 December 2019 Spatial epidemiological analyses primarily depend on spatially-indexed medical records. Some countries have devised ways of capturing patient-specific spatial details using ZIP codes, postcodes or personal numbers, which are geocoded. However, for most resource-constrained African countries, the absence of a means to capture patient resident location as well as inexisten

https://www.lupop.lu.se/article/establishing-spatially-enabled-health-registry-systems-using-implicit-spatial-data-pools-case-study - 2025-02-06

Published 25 September 2019 Registry-based medical research is an important tool in assessing health care interventions in the general population. Observational studies are used to establish effectiveness whereas randomized clinical trials assess efficacy in an experimental manner targeting a carefully selected population of patients. Medical registries may be office or hospital based, state/provi

https://www.lupop.lu.se/article/registry-based-medical-research-data-dredging-or-value-building-quality-care - 2025-02-06

Published 26 September 2019 Clinical auditing is an emerging instrument for quality assessment and improvement.Moreover, clinical registries facilitate medical research as they provide ‘real world’ data. It is importantthat entered data are robust and reliable. The aim of this study was to describe the evolving procedureand results of data verication within the Dutch Institute for Clinical Auditi

https://www.lupop.lu.se/article/data-verification-nationwide-clinical-quality-registries - 2025-02-06

Published 27 September 2019 Liver cirrhosis is a risk factor for hepatocellular carcinoma (HCC). While the HCC risk is thought to be highest in hepatitis B and hepatitis C, the risk in other cirrhosis etiologies is not fully established. Therefore, we aimed to study the risk and outcome of HCC in alcoholic cirrhosis compared to cirrhosis of other etiologies, in Sweden. New publication in Scandinav

https://www.lupop.lu.se/article/risk-and-outcome-hepatocellular-carcinoma-liver-cirrhosis-southern-sweden-population-based-study - 2025-02-06

Published 26 September 2019 Want research in Europe to be more FAIR? Your views count! FAIRsFAIR Open Consultation is open. Read more here.

https://www.lupop.lu.se/article/fair-data-policies-and-practices - 2025-02-06

Published 29 September 2019 The conference theme, “Data by Design: Building a Sustainable Data Culture”, emphasizes two core values embedded in the culture of Gothenburg and Sweden: design and sustainability. Read more here.

https://www.lupop.lu.se/article/46th-annual-iassist-conference-gothenburg - 2025-02-06

Published 27 September 2019 Under seminariet presenterades den andra, kvantitativa, delstudien av forskares attityder till forskningskommunikation och öppen vetenskap. Studien bygger på enkätsvar från cirka 3 700 forskare vid svenska lärosäten. Se en inspelning av seminariet här.

https://www.lupop.lu.se/article/dialogseminarium-om-forskare-och-kommunikation - 2025-02-06

Published 30 September 2019 Selection bias affects Mendelian randomization investigations when selection into the study sample depends on a collider between the genetic variant and confounders of the risk factor–outcome association. However, the relative importance of selection bias for Mendelian randomization compared with other potential biases is unclear. New publication in International Journa

https://www.lupop.lu.se/article/contextualizing-selection-bias-mendelian-randomization-how-bad-it-likely-be - 2025-02-06

Published 1 October 2019 Cross-sectional normative dual energy X-ray absorptiometry data in 1052 men aged 18–28 years New publication in BMC Musculoskeletal Disorders.Read more here.

https://www.lupop.lu.se/article/does-peak-bone-mass-correlate-peak-bone-strength - 2025-02-06

Published 2 October 2019 The European Medicines Agency (EMA) established the Patient Registry Initiative to explore ways of supporting the use of patient registries in generating high-quality data for regulatory decision making and to enable a systematic approach to their use. We review barriers and opportunities for using patient registries in medicines regulation. A key aspect is that early disc

https://www.lupop.lu.se/article/barriers-and-opportunities-use-patient-registries-medicines-regulation - 2025-02-06

Published 3 October 2019 Soil-transmitted helminth infections have been found to be associated with child development. The objective was to investigate hemoglobin levels and malnutrition as mediators of the association between Ascaris infection and intelligence quotient (IQ) scores in children. New publication in Epidemiology.Read more here.

https://www.lupop.lu.se/article/bayesian-methods-exposure-misclassification-adjustment-mediation-analysis - 2025-02-06

Published 4 October 2019 Establishment of orthopaedic registers started in 1975 and many registers have been initiated since. The main purpose of registers is to collect information on patients, implants and procedures in order to monitor and improve the outcome of the specific procedure. New publicatoin in Efort.Read more here

https://www.lupop.lu.se/article/what-when-and-how-orthopaedic-registers-introduction-register-based-research-0 - 2025-02-06

Published 1 October 2019 Did you know that you can find papers on the quality of and uses for the Swedish National Patient Register on lupop.lu.se? To read more, go here.

https://www.lupop.lu.se/article/validating-swedish-national-patient-register - 2025-02-06