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

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 several missing data methods whe

https://www.lupop.lu.se/article/impact-missing-data-bias-and-precision-when-estimating-change-patient-reported-outcomes-clinical - 2025-11-18

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

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/provincial, national, or more rec

https://www.lupop.lu.se/article/registry-based-medical-research-data-dredging-or-value-building-quality-care - 2025-11-18

Data verification of nationwide clinical quality registries

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 Auditing (DICA). New publication i

https://www.lupop.lu.se/article/data-verification-nationwide-clinical-quality-registries - 2025-11-18

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

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 Scandinavian Journal of Gastroenterol

https://www.lupop.lu.se/article/risk-and-outcome-hepatocellular-carcinoma-liver-cirrhosis-southern-sweden-population-based-study - 2025-11-18

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

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 Journal of Epidemiology.Read more

https://www.lupop.lu.se/article/contextualizing-selection-bias-mendelian-randomization-how-bad-it-likely-be - 2025-11-18

Barriers and Opportunities for Use of Patient Registries in Medicines Regulation

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 discussions between all parti

https://www.lupop.lu.se/article/barriers-and-opportunities-use-patient-registries-medicines-regulation - 2025-11-18

Bayesian Methods for Exposure Misclassification Adjustment in a Mediation Analysis

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 - 2025-11-18

The what, when and how of orthopaedic registers: an introduction into register-based research

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 - 2025-11-18

The Chinese National Twin Registry: a ‘gold mine’ for scientific research

The Chinese National Twin Registry (CNTR) currently includes data from 61 566 twin pair from 11 provinces or cities in China. Of these, 31 705, 15 060 and 13 531 pairs are monozygotic, same‐sex dizygotic and opposite‐sex dizygotic pairs, respectively, determined by opposite sex or intrapair similarity. Read more here.

https://www.lupop.lu.se/article/chinese-national-twin-registry-gold-mine-scientific-research - 2025-11-18