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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

Glossary of health equity in the context of environmental public health practice

This Glossary, rooted primarily in the Canadian context but drawing on lessons from elsewhere, describes environmental public health regulatory practice in relation to health equity, including approaches that practitioners can use to contribute to addressing the social determinants of health. Read more here.

https://www.lupop.lu.se/article/glossary-health-equity-context-environmental-public-health-practice - 2025-11-18

Patient Registries in Idiopathic Pulmonary Fibrosis

Over the past decade, several large registries of patients with idiopathic pulmonary fibrosis (IPF) have been established. These registries are collecting a wealth of longitudinal data on thousands of patients with this rare disease. The data collected in these registries will be complementary to data collected in clinical trials because the patient populations studied in registries have a broader

https://www.lupop.lu.se/article/patient-registries-idiopathic-pulmonary-fibrosis - 2025-11-18

Rationale and Design of the Hamburg City Health Study

The Hamburg City Health Study (HCHS) is a large, prospective, long-term, population-based cohort study and a unique research platform and network to obtain substantial knowledge about several important risk and prognostic factors in major chronic diseases. A random sample of 45,000 participants between 45 and 74 years of age from the general population of Hamburg, Germany, are taking part in an ex

https://www.lupop.lu.se/article/rationale-and-design-hamburg-city-health-study - 2025-11-18

Should “garbage in–garbage out” be replaced by “little in–little out”? Questionnaire response rates need to be improved in surgical quality registries!

Surgical quality registries are important tools for both performing research and improving clinical practice. The Swedish National Knee Ligament Registry (SNKLR) has collected patient-reported and surgical data on more than 90% of the anterior cruciate ligament (ACL) reconstructions in Sweden. There has year-by-year been an increasing number of publications using data from SNKLR and the Scandinavi

https://www.lupop.lu.se/article/should-garbage-garbage-out-be-replaced-little-little-out-questionnaire-response-rates-need-be - 2025-11-18

Bias from self selection and loss to follow-up in prospective cohort studies

Self-selection into prospective cohort studies and loss to follow-up can cause biased exposure-outcome association estimates. Previous investigations illustrated that such biases can be small in large prospective cohort studies. The structural approach to selection bias shows that general statements about bias are not possible for studies that investigate multiple exposures and outcomes, and that

https://www.lupop.lu.se/article/bias-self-selection-and-loss-follow-prospective-cohort-studies - 2025-11-18

Long-term outcome after ischemic stroke in relation to comorbidity – An observational study from the Swedish Stroke Register (Riksstroke)

Comorbidity in stroke is common, but comprehensive reports are sparse. We describe prevalence of comorbidity and the prognostic impact on mortality and functional outcome in a large national ischemic stroke cohort. New publication in SAGE Journals

https://www.lupop.lu.se/article/long-term-outcome-after-ischemic-stroke-relation-comorbidity-observational-study-swedish-stroke - 2025-11-18

A step in the right direction: Harmonizing measures for use in asthma patient registries

Multiple asthma patient registries have been established globally to provide valuable information on current clinical management, including treatment patterns, adherence, and the long-term outcomes that are important to patients, providers, and other decision makers. New publication in Immunology

https://www.lupop.lu.se/article/step-right-direction-harmonizing-measures-use-asthma-patient-registries - 2025-11-18

Risk of being born preterm in offspring of survivors with childhood or adolescent central nervous system tumor in Sweden

An increasing number of patients with central nervous system (CNS) tumor could survive to reproductive age. However, it is largely unknown whether the history of CNS tumor might affect pregnancy outcome. We aimed to explore the risk of being born preterm among children of CNS tumor survivors. New publication in International Journal of Cancer

https://www.lupop.lu.se/article/risk-being-born-preterm-offspring-survivors-childhood-or-adolescent-central-nervous-system-tumor - 2025-11-18

A 24-step guide on how to design, conduct, and successfully publish a systematic review and meta-analysis in medical research

To inform evidence-based practice in health care, guidelines and policies require accurate identification, collation, and integration of all available evidence in a comprehensive, meaningful, and time-efficient manner. Approaches to evidence synthesis such as carefully conducted systematic reviews and meta-analyses are essential tools to summarize specific topics. Unfortunately, not all systematic

https://www.lupop.lu.se/article/24-step-guide-how-design-conduct-and-successfully-publish-systematic-review-and-meta-analysis - 2025-11-18