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ENVRI-FAIR training webinar

How FAIRsharing can help FAIRify your standards, databases and data policies Time: Friday 13 December at 10-11 CETLecturer: Peter McQuilton, FAIRsharing, UKOrganizers: ENVRI-FAIR WP 6 through Maggie Hellström, Niccola Fiore, Jacco Konjin and Maria JohnssonWhere: Zoom meeting room (link in flyer)Registration: Not needed to attend the webinarDownload flyer here.

https://www.lupop.lu.se/article/envri-fair-training-webinar - 2025-08-31

Assistant Professor in Lifestyle Epidemiology New job

The Research Unit of Exercise Epidemiology and the Centre of Childhood Health , Department of Sports Science and Clinical Biomechanics invite applications for a position as assistant professor in health sciences within Lifestyle Epidemiology to be filled as soon as possible and until 30 September 2021. Application deadline: January 5, 2020Read more here

https://www.lupop.lu.se/article/assistant-professor-lifestyle-epidemiology-new-job - 2025-08-31

Seminar: Project Metropolitan

"Project Metropolitan" is a unique longitudinal population study, including more than 15 000 children born in Stockholm in 1953, designed to answer the question: “Why do some get on better in life than others?” One of the main aims of the project was to study the long-term impact of conditions in childhood. However, in 1986, media started reporting about the study, making claims of people being se

https://www.lupop.lu.se/article/seminar-project-metropolitan - 2025-08-31

Vice-dean for Research

Would you like to develop and implement visions and strategies for health-science research? Are you an internationally oriented researcher with leadership ambitions? Would you enjoy a visible and facilitating role within the Faculty and across organisational borders? Then one of the most attractive positions at the Faculty of Health at Aarhus University can be yours from 1 May 2020. More informati

https://www.lupop.lu.se/article/vice-dean-research - 2025-08-31

Development and challenges in setting up an international bone infection registry.

Osteomyelitis is an increasing burden on the society especially due to the emergence of multiple drug-resistant organisms. The lack of a central registry that prospectively collects data on patient risk factors, laboratory test results, treatment modalities, serological analysis results, and outcomes has hampered the research effort that could have improved and provided guidelines for treatments o

https://www.lupop.lu.se/article/development-and-challenges-setting-international-bone-infection-registry - 2025-08-31

The use of an electronic register in monitoring the incidence of osteoporosis among residents of the north

The article deals with operating the systems for preventing low-energy fractures in patients older than 50 years with signs of osteoporosis, complemented by trauma and therapeutic services. The current paradigm of osteoporosis diagnostics is to identify and follow up on patients with high risk of osteoporotic fractures – on the basis of clinical factors for 10-year absolute risk according to FRAX

https://www.lupop.lu.se/article/use-electronic-register-monitoring-incidence-osteoporosis-among-residents-north - 2025-08-31

Mortality patterns in long-term survivors of childhood or adolescent central nervous system tumour in Sweden

A growing number of young patients with central nervous system (CNS) tumour survived for more than five years. However, these long-term survivors might be at risk of multiple late effects thus leading to a higher risk of late mortality. We aimed to explore the risk of late mortality and the pattern of mortality among long-term survivors of childhood or adolescent CNS tumour. New publication in Spr

https://www.lupop.lu.se/article/mortality-patterns-long-term-survivors-childhood-or-adolescent-central-nervous-system-tumour-sweden - 2025-08-31

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

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 - 2025-08-31

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

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 services research, humaniti

https://www.lupop.lu.se/article/interdisciplinary-research-public-health-why-and-how - 2025-08-31

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

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 - 2025-08-31

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

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 - 2025-08-31

Completeness of case ascertainment in Swedish hospital‐based stroke registers

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 - 2025-08-31

The Netherlands Arrhythmogenic Cardiomyopathy Registry: design and status update

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 - 2025-08-31

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

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 - 2025-08-31

Leveraging the Full Potential of Clinical Registries

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 - 2025-08-31

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

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 - 2025-08-31

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

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 - 2025-08-31