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Central cancer registries collect data and provide population-level statistics that can be tracked over time; yet registries may not capture the full range of clinically relevant outcomes. Patient-generated health data (PGHD) include health/treatment history, biometrics, and patient-reported outcomes (PROs). Collection of PGHD would broaden registry outcomes to better inform research, policy, and

https://www.lupop.lu.se/article/cancer-survivor-perspectives-sharing-patient-generated-health-data-central-cancer-registries - 2025-11-30

Randomised controlled trials (RCTs) conducted using cohorts and routinely collected health data, including registries, electronic health records and administrative databases, are increasingly used in healthcare intervention research. The development of an extension of the CONsolidated Standards of Reporting Trials (CONSORT) statement for RCTs using cohorts and routinely collected health data is be

https://www.lupop.lu.se/article/protocol-scoping-review-support-development-consort-extension-randomised-controlled-trials-using - 2025-11-30

There is a worldwide development toward using data from hospital‐based stroke registers to estimate epidemiological trends. However, incomplete case ascertainment may cause selection bias. We examined the completeness of case ascertainment and selection bias in two hospital‐based Swedish stroke registers. New publication in Acta Neurologica Scandinavia

https://www.lupop.lu.se/article/completeness-case-ascertainment-swedish-hospital-based-stroke-registers - 2025-11-30

This is a multicentre, longitudinal, observational cohort study that includes (1) patients with a definite ACM diagnosis, (2) at-risk relatives of ACM patients, and (3) ACM-associated mutation carriers. At baseline and every follow-up visit, a medical history as well information regarding (non-)invasive tests is collected (e. g. electrocardiograms, Holter recordings, imaging and electrophysiologic

https://www.lupop.lu.se/article/netherlands-arrhythmogenic-cardiomyopathy-registry-design-and-status-update - 2025-11-30

The purpose of the present study was to assess the agreement between self‐reported use of sleep medications and tranquilizers and dispensed hypnotics and anxiolytics. New publication in PDS

https://www.lupop.lu.se/article/agreement-between-self-reported-and-registry-based-use-sleep-medications-and-tranquilizers - 2025-11-30

The purpose of this paper is to understand what role researchers assign to online representations on the new digital communication sites that have emerged, such as Academia, ResearchGate or Mendeley. How are researchers’ online presentations created, managed, accessed and, more generally, viewed by academic researchers themselves? And how are expectations of the academic reward system navigated an

https://www.lupop.lu.se/article/researchers-online-visibility-tensions-visibility-trust-and-reputation-0 - 2025-11-30

The promise of clinical registries lies in their ability to guide clinical practice with valid, specific, and high-quality information. While registries vary in their design and purpose, most are structured systems that compile organized clinical data for a given disease or groups of diseases. Participating institutions send information on patients to central repositories. By systematically collec

https://www.lupop.lu.se/article/leveraging-full-potential-clinical-registries - 2025-11-30

Patterns and determinants of long‐term oral corticosteroid (OCS) use in asthma and related morbidity and mortality are not well‐described. In a nationwide asthma cohort in Sweden, we evaluated the patterns and determinants of OCS use and risks of OCS‐related morbidities and mortality. New publication in Allergy

https://www.lupop.lu.se/article/oral-corticosteroid-use-morbidity-and-mortality-asthma-nationwide-prospective-cohort-study-sweden - 2025-11-30

Over the last several years, there has been increasing awareness around the unique challenges faced by adolescent and young adult (AYA) cancer patients. More cancer centers across the United States are introducing AYA-specific programs to help improve outcomes for these patients. However, given the nature of the United States health care system, there is little ability to track the efficacy of the

https://www.lupop.lu.se/article/argument-adolescent-and-young-adult-cancer-registry-one-model - 2025-11-30

Risk factors and consequences of asthma can be studied by using validated questionnaires. The overall objective of this study was to assess the agreement of parental-reported asthma-related questions regarding their children against Swedish health care registers. New publication in Pharmacoepidemiol Drug Saf.

https://www.lupop.lu.se/article/agreement-between-asthma-questionnaire-and-health-care-register-data-0 - 2025-11-30

New publication in Rev Esp Cardiol

https://www.lupop.lu.se/article/spanish-cardiovascular-imaging-registry-first-official-report-spanish-society-cardiology-working - 2025-11-30

New publication in Eur Neuropsychopharmacol

https://www.lupop.lu.se/article/need-paediatric-registries-assess-long-term-brain-effects-psychotropic-medications-case-bipolar - 2025-11-30

High-quality biobanking within routine health services, through the use of existing health-care practices and infrastructure, with respect to safety and integrity of patients in line with the Swedish Biobank Act, enables large-scale collection of biological material at reasonable costs. Complementing the extensive information on myocardial infarction patients from a national registry gives unique

https://www.lupop.lu.se/article/biobank-linked-swedeheart-quality-registry-routine-blood-sample-collection-opens-new-opportunities - 2025-11-30

Spatial epidemiological analyses primarily depend on spatially-indexed medical records. Some countries have devised ways of capturing patient-specific spatial details using ZIP codes, postcodes or personal numbers, which are geocoded. However, for most resource-constrained African countries, the absence of a means to capture patient resident location as well as inexistence of spatial data infrastr

https://www.lupop.lu.se/article/establishing-spatially-enabled-health-registry-systems-using-implicit-spatial-data-pools-case-study - 2025-11-30

In summary, the authors have proposed progressive ideas which could improve surveillance however, in our view, it is likely that many programs will not have the political and medical support needed for implementation with the exception of mortality outcomes. New publication in European Journal of Medical Genetics

https://www.lupop.lu.se/article/triple-surveillance-future-birth-defect-registries - 2025-11-30

We herein outline the rationale for a Swedish cohort consortium, aiming to facilitate greater use of Swedish cohorts for world-class research. Coordination of all Swedish prospective population-based cohorts in a common infrastructure would enable more precise research findings and facilitate research on rare exposures and outcomes, leading to better utilization of study participants' data, better

https://www.lupop.lu.se/article/rationale-swedish-cohort-consortium-0 - 2025-11-30

PSYCOHORTS lays the foundation for complex examinations of psychiatric disorders that is based on compatible datasets, use of biobanks and multigenerational approach to risk factors, and extensive data on marginalization and inequality. New publication in Nordic Journal of Psychiatry

https://www.lupop.lu.se/article/finnish-psychiatric-birth-cohort-consortium-psycohorts-content-plans-and-perspectives - 2025-11-30

CandiReg provides an eCRF for invasive Candida infections that can be used for a variety of studies from cohort studies on attributable mortality to evaluations of guideline adherence, offering to the investigators of the 28 ECMM member countries the opportunity to document their cases of invasive Candida infection. CandiReg allows the monitoring of epidemiology of invasive Candida infections, inc

https://www.lupop.lu.se/article/ecmm-candireg-ready-use-platform-outbreaks-and-epidemiological-studies - 2025-11-30

The Nordic Arthroplasty Register Association (NARA) was established in 2007 by arthroplasty register representatives from Sweden, Norway and Denmark with the overall aim to improve the quality of research and thereby enhance the possibility for quality improvement with arthroplasty surgery. Finland joined the NARA collaboration in 2010.NARA minimal hip, knee and shoulder datasets were created with

https://www.lupop.lu.se/article/benefits-collaboration-nordic-arthroplasty-register-association-0 - 2025-11-30

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 screening by the SBT and screen

https://www.lupop.lu.se/article/start-back-screening-tool-and-pain-mannequin-improve-triage-individuals-low-back-pain-risk-worse - 2025-11-30