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 - 2025-08-27

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 - 2025-08-27

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 - 2025-08-27

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 - 2025-08-27

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 - 2025-08-27

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 - 2025-08-27

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 - 2025-08-27

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 - 2025-08-27

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 - 2025-08-27

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 - 2025-08-27

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 - 2025-08-27

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 - 2025-08-27

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 - 2025-08-27

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 - 2025-08-27

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 - 2025-08-27

New publication in Rev Esp Cardiol

https://www.lupop.lu.se/article/spanish-cardiovascular-imaging-registry-first-official-report-spanish-society-cardiology-working - 2025-08-27

New publication in Eur Neuropsychopharmacol

https://www.lupop.lu.se/article/need-paediatric-registries-assess-long-term-brain-effects-psychotropic-medications-case-bipolar - 2025-08-27

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 - 2025-08-27

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 - 2025-08-27

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 - 2025-08-27