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An automated data verification approach for improving data quality in a clinical registry

Published 12 December 2019 The quality of data is crucial for clinical registry studies as it impacts credibility. In the regular practice of most such studies, a vulnerability arises from researchers recording data on paper-based case report forms (CRFs) and further transcribing them onto registry databases. New publication in Computer Methods and Programs in Biomedicine

https://www.lupop.lu.se/article/automated-data-verification-approach-improving-data-quality-clinical-registry - 2025-03-16

Interdisciplinary research in public health: the ‘why’ and the ‘how’

Published 13 December 2019 Public health constitutes a field of choice for developing interdisciplinary research. Targeting population health improvement necessarily entails embedding research and intervention within a variety of complementary disciplinary approaches. Medicine (and its scientific and professional domains), psychology, epidemiology, economics, social and political sciences, health

https://www.lupop.lu.se/article/interdisciplinary-research-public-health-why-and-how - 2025-03-16

Cancer survivor perspectives on sharing patient-generated health data with central cancer registries

Published 13 December 2019 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 in

https://www.lupop.lu.se/article/cancer-survivor-perspectives-sharing-patient-generated-health-data-central-cancer-registries - 2025-03-16

Protocol for a scoping review to support development of a CONSORT extension for randomised controlled trials using cohorts and routinely collected health data

Published 14 December 2019 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

https://www.lupop.lu.se/article/protocol-scoping-review-support-development-consort-extension-randomised-controlled-trials-using - 2025-03-16

Completeness of case ascertainment in Swedish hospital‐based stroke registers

Published 14 December 2019 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 - 2025-03-16

The Netherlands Arrhythmogenic Cardiomyopathy Registry: design and status update

Published 15 December 2019 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, ima

https://www.lupop.lu.se/article/netherlands-arrhythmogenic-cardiomyopathy-registry-design-and-status-update - 2025-03-16

Researchers’ online visibility: tensions of visibility, trust and reputation

Published 16 December 2019 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

https://www.lupop.lu.se/article/researchers-online-visibility-tensions-visibility-trust-and-reputation-0 - 2025-03-16

Leveraging the Full Potential of Clinical Registries

Published 16 December 2019 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 repositorie

https://www.lupop.lu.se/article/leveraging-full-potential-clinical-registries - 2025-03-16

Oral corticosteroid use, morbidity and mortality in asthma: A nationwide prospective cohort study in Sweden

Published 17 December 2019 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 - 2025-03-16

An Argument for Adolescent and Young Adult Cancer Registry: One Model

Published 17 December 2019 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 t

https://www.lupop.lu.se/article/argument-adolescent-and-young-adult-cancer-registry-one-model - 2025-03-16

Agreement between asthma questionnaire and health care register data.

Published 18 December 2019 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 - 2025-03-16

Biobank linked to SWEDEHEART quality registry-routine blood sample collection opens new opportunities for cardiovascular research.

Published 19 December 2019 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 nati

https://www.lupop.lu.se/article/biobank-linked-swedeheart-quality-registry-routine-blood-sample-collection-opens-new-opportunities - 2025-03-16

Establishing spatially-enabled health registry systems using implicit spatial data pools: case study – Uganda

Published 20 December 2019 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 inexisten

https://www.lupop.lu.se/article/establishing-spatially-enabled-health-registry-systems-using-implicit-spatial-data-pools-case-study - 2025-03-16

Rationale for a Swedish cohort consortium.

Published 21 December 2019 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

https://www.lupop.lu.se/article/rationale-swedish-cohort-consortium-0 - 2025-03-16

The Finnish psychiatric birth cohort consortium (PSYCOHORTS) - content, plans and perspectives.

Published 21 December 2019 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 - 2025-03-16

Data verification of nationwide clinical quality registries

Published 26 September 2019 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 Auditi

https://www.lupop.lu.se/article/data-verification-nationwide-clinical-quality-registries - 2025-03-16