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The Third China National Stroke Registry (CNSR-III) for patients with acute ischaemic stroke or transient ischaemic attack: design, rationale and baseline patient characteristics

Stroke is the leading cause of mortality and disability in China. Precise aetiological classification, imaging and biological markers may predict the prognosis of stroke. The Third China National Stroke Registry (CNSR-III), a nationwide registry of ischaemic stroke or transient ischaemic attack (TIA) in China based on aetiology, imaging and biology markers, will be considered to clarify the pathog

https://www.lupop.lu.se/article/third-china-national-stroke-registry-cnsr-iii-patients-acute-ischaemic-stroke-or-transient-ischaemic - 2025-12-30

Survival Bias in Mendelian Randomization Studies A Threat to Causal Inference

It has been argued that survival bias may distort results in Mendelian randomization studies in older populations. Through simulations of a simple causal structure we investigate the degree to which instrumental variable (IV)-estimators may become biased in the context of exposures that affect survival. We observed that selecting on survival decreased instrument strength and, for exposures with di

https://www.lupop.lu.se/article/survival-bias-mendelian-randomization-studies-threat-causal-inference - 2025-12-30

Was it worth it? Older adults’ experiences of participating in a population-based cohort study – a focus group study

At present, we know relatively little about priorities and problems with topics that older adults experience when completing different examinations in longitudinal population-based studies. To examine these topics, research must be adapted to investigate the meanings, motivations, and interpretations of the individual participants themselves. New publication in BMC Geriatrics.Read more here.

https://www.lupop.lu.se/article/was-it-worth-it-older-adults-experiences-participating-population-based-cohort-study-focus-group - 2025-12-30

Cancer registries - guardians of breast cancer biomarker information: A systematic review

Breast cancer is the most common cancer and the leading cause of cancer-related death in females, with a large societal and economic impact. Decisions regarding its treatment are largely affected by the categorization into different subtypes with hormone receptor status and HER2 status being the most important predictive factors. New publication in SAGE Journals.Read more here.

https://www.lupop.lu.se/article/cancer-registries-guardians-breast-cancer-biomarker-information-systematic-review - 2025-12-30

Development and Implementation of a Wheelchair Outcomes Registry

The FMA is a validated 10-item patient-centered outcome measure that investigates satisfaction in performing common mobility-related activities of daily living. The UDS includes variables related to age, diagnosis, and type of device used, as well as health, participation, and environmental factors. New publication in Archives of Physical Medicine and Rehabilitation.Read more here.

https://www.lupop.lu.se/article/development-and-implementation-wheelchair-outcomes-registry - 2025-12-30

The impact of parenthood on risk of registration for alcohol use disorder in married individuals: a Swedish population-based analysis

In married individuals, resident children are associated with a reduction in basal risk for AUD which is stronger in mothers than fathers and with younger v. older children. This effect is also evident during high-risk periods. In mothers, our results are consistent with a largely causal effect. New publication in Psychological Medicine.Read more here.

https://www.lupop.lu.se/article/impact-parenthood-risk-registration-alcohol-use-disorder-married-individuals-swedish-population - 2025-12-30

Research methodology and practical issues relating to the conduct of a medical device registry

Both clinical trials and registries are essential and complementary research methods and the strengths and weaknesses of each need to be recognized. The specific characteristics of registry research deserve to be acknowledged and safeguarded in the regulations governing clinical investigations with medical devices. New publication in SAGE Journals.Read more here

https://www.lupop.lu.se/article/research-methodology-and-practical-issues-relating-conduct-medical-device-registry - 2025-12-30

On the potential of incorporating administrative register data into randomized experiments

Employing Norwegian register data in a between-group comparison illustrates that register data would be particularly useful for several key areas of an RCT, including as a source of pilot data, to expand the range of variables on which between-group equivalence can be demonstrated, to increase the length of the observation period, to expand the number and type of individual-level outcomes availabl

https://www.lupop.lu.se/article/potential-incorporating-administrative-register-data-randomized-experiments - 2025-12-30

National Cancer Database: The Past, Present, and Future of the Cancer Registry and Its Efforts to Improve the Quality of Cancer Care

The National Cancer Database (NCDB) continues to evolve to improve the care of the cancer patient. Over the last 30 years, the NCDB has compiled nearly 40 million patient records submitted by over 1500 hospitals across the country. Addressing new challenges, the NCDB is transitioning to ensure data flow is more timely and data collection more efficient. New publication in Seminars in Radiation Onc

https://www.lupop.lu.se/article/national-cancer-database-past-present-and-future-cancer-registry-and-its-efforts-improve-quality - 2025-12-30

Early-life inequalities and biological ageing: a multisystem Biological Health Score approach in Understanding Society

Social position is known to play a role in the quality of ageing, notably through the stimulation/dysregulation of key physiological systems in response to external stresses. Using data from one wave of Understanding Society including 9088 participants, we defined, as an extension of the allostatic load, a synthetic Biological Health Score (BHS) capturing the wear-and-tear of four physiological sy

https://www.lupop.lu.se/article/early-life-inequalities-and-biological-ageing-multisystem-biological-health-score-approach - 2025-12-30

Development of a multinational registry of pediatric deceased organ donation activity

There are no currently agreed upon international standards for reporting of pediatric deceased organ donation activity. This leads to difficulty in comparisons between jurisdictions for both researchers and policy stakeholders. The goal of this project was to develop and test a standardized registry for pediatric deceased donation activity. New publication in Pediatric Transplantation.Read more he

https://www.lupop.lu.se/article/development-multinational-registry-pediatric-deceased-organ-donation-activity - 2025-12-30

Commonly used estimates of the genetic contribution to disease are subject to the same fallacies as bad luck estimates

The scientific debate following the initial formulation of the “bad luck” hypothesis in cancer development highlighted how measures based on analysis of variance are inappropriately used for risk communication. The notion of “explained” variance is not only used to quantify randomness, but also to quantify genetic and environmental contribution to disease in heritability coefficients. New publicat

https://www.lupop.lu.se/article/commonly-used-estimates-genetic-contribution-disease-are-subject-same-fallacies-bad-luck-estimates - 2025-12-30

Whole-genome sequencing of triple-negative breast cancers in a population-based clinical study

Whole-genome sequencing (WGS) brings comprehensive insights to cancer genome interpretation. To explore the clinical value of WGS, we sequenced 254 triple-negative breast cancers (TNBCs) for which associated treatment and outcome data were collected between 2010 and 2015 via the population-based Sweden Cancerome Analysis Network–Breast (SCAN-B) project (ClinicalTrials.gov ID:NCT02306096). New publ

https://www.lupop.lu.se/article/whole-genome-sequencing-triple-negative-breast-cancers-population-based-clinical-study - 2025-12-30

Population-Based Observational Studies in Oncology: Proceed With Caution

A principle goal of research in Oncology is to determine the optimal treatment for our patients. This often takes the form of comparing 2 existing therapies to one another to determine which is superior, or to introduce a new therapy and determine if it is superior or noninferior to the existing standard of care. New publication in Seminars in Radiation Oncology

https://www.lupop.lu.se/article/population-based-observational-studies-oncology-proceed-caution - 2025-12-30

Validation of diagnosis codes to identify side of colon in an electronic health record registry

ICD codes are a highly reliable indicator of tumor location when the specific location code is entered in the EHR. However, non-specific side of colon ICD codes are present for a sizable minority of patients, and structured data alone may not be adequate to support testing of some research hypotheses. New publication in BMC Medical Research Methodology

https://www.lupop.lu.se/article/validation-diagnosis-codes-identify-side-colon-electronic-health-record-registry - 2025-12-30