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The Future of Biobanking

Published 24 September 2019 The importance of biobanks as a nexus for the development of future diagnostics and treatments in healthcare is becoming increasingly obvious. Increasingly biobanks are emerging as the backbone of medical research, yet the full potential of biobanks has yet to be reached. This conference is organized around the theme of the future of biobanks. The talks will seek to go

https://www.lupop.lu.se/article/future-biobanking - 2025-08-19

Impact of missing data on bias and precision when estimating change in patient-reported outcomes from a clinical registry

Published 24 September 2019 Clinical registries, which capture information about the health and healthcare use of patients with a health condition or treatment, often contain patient-reported outcomes (PROs) that provide insights about the patient’s perspectives on their health. Missing data can affect the value of PRO data for healthcare decision-making. We compared the precision and bias of seve

https://www.lupop.lu.se/article/impact-missing-data-bias-and-precision-when-estimating-change-patient-reported-outcomes-clinical - 2025-08-19

Registry-Based Medical Research: Data Dredging or Value Building to Quality of Care?

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 - 2025-08-19

Data verification of nationwide clinical quality registries

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 - 2025-08-19

Risk and outcome of hepatocellular carcinoma in liver cirrhosis in Southern Sweden: a population-based study

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 - 2025-08-19

Contextualizing selection bias in Mendelian randomization: how bad is it likely to be?

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 - 2025-08-19

Barriers and Opportunities for Use of Patient Registries in Medicines Regulation

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 - 2025-08-19

VR ställer krav på datahanteringsplan

Published 13 April 2019 Från och med 2019 behöver du som beviljas bidrag från Vetenskapsrådet ha en datahanteringsplan om din forskning genererar forskningsdata. Planen ska beskriva hur data som samlas in och/eller skapas kommer att hanteras under forskningens gång och hur den ska tas om hand efteråt. Läs mer här. Vill du veta mer om datahanteringsplaner, kan du anmäla dig till seminarium i Lund (

https://www.lupop.lu.se/article/vr-staller-krav-pa-datahanteringsplan - 2025-08-19

First results from the Swedish National Pancreatic and Periampullary Cancer Registry.

Published 12 April 2019 Results from the Swedish National Registry are satisfactory and comparable to international standards. Trends over time show increasing resection rates and some improved results. Better collaboration and openness within pancreatic surgeons is an important side effect. New publication in the official Journal of the International Hepato Pancreato Biliary AssociationRead more

https://www.lupop.lu.se/article/first-results-swedish-national-pancreatic-and-periampullary-cancer-registry-0 - 2025-08-19

Learning what works: a framwork for causal inference from observational data

Published 15 April 2019 This is an open seminar with professor Miguel Hernán A 3 half-day seminar on Causal Inference with Miguel Hernán, professor of Biostatistics and Epidemiology at Harvard School of Public Health.The scheduel is as follow:Monday May 6 at 1-5PMTuesday May 7 at 1-5PMWednesday May 8 at 9-12AMLocation: Arvid Carlsson, Acadmicum, GothenburgRead more here 

https://www.lupop.lu.se/article/learning-what-works-framwork-causal-inference-observational-data - 2025-08-19

Quality indicators and their regular use in clinical practice: results from a survey among users of two cardiovascular National Registries in Sweden

Published 16 April 2019 Most respondents used quality indicators from the two cardiovascular NQRs infrequently (<3 times/year). The results indicate that linking registration of quality indicators to using them for QI activities increases their routine use and makes them meaningful tools for professionals. New publication in International Journal for Quality in Health CareRead more here

https://www.lupop.lu.se/article/quality-indicators-and-their-regular-use-clinical-practice-results-survey-among-users-two - 2025-08-19

Patient-reported outcome and experience measures for diabetes: development of scale models, differences between patient groups and relationships with cardiovascular and diabetes complication risk factors, in a combined registry and survey study in Sweden.

Published 17 April 2019 The questionnaire measures and detects differences in patient well-being, abilities and judgements of diabetes care, and identifies areas for improvement. To further improve diabetes care, we conclude that patient-reported measures are important supplements to cardiovascular and diabetes complication risk factors, reflecting patient experiences of living with diabetes and d

https://www.lupop.lu.se/article/patient-reported-outcome-and-experience-measures-diabetes-development-scale-models-differences - 2025-08-19

Causal models adjusting for time-varying confounding—a systematic review of the literature

Published 18 April 2019 There has been marked growth in reports addressing exposure-affected time-varying confounding. This was driven by work in a small number of topic areas, with other areas showing relatively little uptake. In addition, despite developments in more advanced methods such doubly robust techniques and estimation via machine learning, implementation has been largely concentrated o

https://www.lupop.lu.se/article/causal-models-adjusting-time-varying-confounding-systematic-review-literature - 2025-08-19