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

Published 4 November 2019 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 - 2025-05-23

On the potential of incorporating administrative register data into randomized experiments

Published 5 November 2019 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 individu

https://www.lupop.lu.se/article/potential-incorporating-administrative-register-data-randomized-experiments - 2025-05-23

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

Published 7 November 2019 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

https://www.lupop.lu.se/article/national-cancer-database-past-present-and-future-cancer-registry-and-its-efforts-improve-quality - 2025-05-23

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

Published 8 November 2019 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-tea

https://www.lupop.lu.se/article/early-life-inequalities-and-biological-ageing-multisystem-biological-health-score-approach - 2025-05-23

Development of a multinational registry of pediatric deceased organ donation activity

Published 11 November 2019 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 T

https://www.lupop.lu.se/article/development-multinational-registry-pediatric-deceased-organ-donation-activity - 2025-05-23

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

Published 12 November 2019 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

https://www.lupop.lu.se/article/commonly-used-estimates-genetic-contribution-disease-are-subject-same-fallacies-bad-luck-estimates - 2025-05-23

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

Published 13 November 2019 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.go

https://www.lupop.lu.se/article/whole-genome-sequencing-triple-negative-breast-cancers-population-based-clinical-study - 2025-05-23

Population-Based Observational Studies in Oncology: Proceed With Caution

Published 14 November 2019 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 - 2025-05-23

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

Published 15 November 2019 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 - 2025-05-23

Key concepts and principles for design and critical interpretation of Nordic register-based studies

Published 12 November 2019 This two-week course is divided into two separate course weeks. The course will be arranged as a retreat somewhere in Sweden. Travel costs and accommodation will be covered in relation to the educational activities. The target group is doctoral students (and those who have recently completed their doctoral education) involved in register-based research within their resea

https://www.lupop.lu.se/article/key-concepts-and-principles-design-and-critical-interpretation-nordic-register-based-studies-0 - 2025-05-23

A critical reflection on the grading of the certainty of evidence in umbrella reviews

Published 19 November 2019 In conclusion, umbrella reviews provide a comprehensive overview of a specific research topic and are very helpful tools to evaluate the certainty of evidence. These systematic overviews are helpful for the translation of research findings into recommendations, and also for identifying new research directions. New publication in European Journal of Epidemiology

https://www.lupop.lu.se/article/critical-reflection-grading-certainty-evidence-umbrella-reviews - 2025-05-23

Chronic pain: a review of its epidemiology and associated factors in population-based studies

Published 20 November 2019 Chronic pain is a common, complex, and distressing problem that has a profound impact on individuals and society. It frequently presents as a result of a disease or an injury; however, it is not merely an accompanying symptom, but rather a separate condition in its own right, with its own medical definition and taxonomy. New publication in British Journal of Anaesthesia

https://www.lupop.lu.se/article/chronic-pain-review-its-epidemiology-and-associated-factors-population-based-studies - 2025-05-23

Doing more of less: what registry data tell us about death in PICU

Published 21 November 2019 The development of paediatric critical care registries, a term we take to include national audits and research databases, has been instrumental in helping us understand the state of children’s critical care and thereby provide a platform for future improvement. Comprehensive datasets enable monitoring of activity and outcomes for audit, safety and service planning. New p

https://www.lupop.lu.se/article/doing-more-less-what-registry-data-tell-us-about-death-picu - 2025-05-23

Twin Registries Moving Forward and Meeting the Future: A Review

Published 22 November 2019 Twin registries have developed as a valuable resource for the study of many aspects of disease and society over the years in many different countries. A number of these registries include large numbers of twins with data collected at varying information levels for twin cohorts over the past several decades. New publication in Cambridge Core

https://www.lupop.lu.se/article/twin-registries-moving-forward-and-meeting-future-review - 2025-05-23

The StarT back screening tool and a pain mannequin improve triage in individuals with low back pain at risk of a worse prognosis – a population based cohort study

Published 23 December 2019 The STarT Back Screening Tool (SBT) identifies patients with low back pain (LBP) at risk of a worse prognosis of persistent disabling back pain, and thereby facilitates triage to appropriate treatment level. However, the SBT does not consider the pain distribution, which is a known predictor of chronic widespread pain (CWP). The aim of this study was to determine if scre

https://www.lupop.lu.se/article/start-back-screening-tool-and-pain-mannequin-improve-triage-individuals-low-back-pain-risk-worse - 2025-05-23

Patient registries for home oxygen research and evaluation.

Published 24 December 2019 Randomized clinical trials are the preferred study design to address key research questions about the benefits or harms of interventions. However, randomized trials of oxygen therapy are difficult to conduct and have limitations. The purpose of this article is to offer our view on the potential use of patient registries in the field of home oxygen in COPD as an alternati

https://www.lupop.lu.se/article/patient-registries-home-oxygen-research-and-evaluation-0 - 2025-05-23