Published 7 December 2019 Prevalence of hemophilia as a proportion of cases to the male population, prevalence of hemophilia at birth as a proportion of cases to live male births by year of birth, life expectancy disadvantage as a 1 − ratio of prevalence to prevalence at birth, and expected number of patients worldwide based on prevalence in high-income countries and prevalence at birth. New publi

https://www.lupop.lu.se/article/establishing-prevalence-and-prevalence-birth-hemophilia-males-meta-analytic-approach-using-national - 2025-03-16

Published 8 December 2019 Collecting Patient-Reported Outcomes (PROs) is an important way to get first-hand information by patients on the outcome of treatments and surgical procedure they have undergone, and hence about the quality of the care provided. However, the quality of PRO data cannot be given for granted and cannot be traced back to the dimensions of timeliness and completeness only. New

https://www.lupop.lu.se/article/pros-wild-assessing-validity-patient-reported-outcomes-electronic-registry - 2025-03-16

Published 8 December 2019 Trauma registry data are used for analyzing and improving patient care, comparison of different units, and for research and administrative purposes. Data should therefore be reliable. The aim of this study was to audit the quality of the Helsinki Trauma Registry internally. We describe how to conduct a validation of a regional or national trauma registry and how to report

https://www.lupop.lu.se/article/how-validate-data-quality-trauma-registry-helsinki-trauma-registry-internal-audit - 2025-03-16

Published 9 December 2019 The longevity for people with intellectual disability (ID) has significantly increased in developed countries during the past decades. Consequently, the incidence of cancer is expected to increase in this group. The aim of the present study was to investigate the prescription of pain medication in older cancer patients with intellectual disability (ID) compared to older p

https://www.lupop.lu.se/article/prescription-pain-medication-among-older-cancer-patients-and-without-intellectual-disability - 2025-03-16

Published 9 December 2019 High-quality national health registries provide the opportunities to: improve patient outcomes by giving medical units and clinicians relevant feedback about their work; detect inferior treatments and identify prognostic factors associated with both good and bad outcomes. New publication in British Journal of Sports Medicine

https://www.lupop.lu.se/article/15-years-scandinavian-knee-ligament-registries-lessons-limitations-and-likely-prospects - 2025-03-16

Published 10 December 2019 his paper adds to the small literature on the role of welfare benefits and mental health by studying the relationship between uptake of Social Assistance Benefit (SAB) and objective mental health measures. We use rich longitudinal administrative data on income, unemployment benefits and psychopharmaceutic prescriptions (antidepressants, anxiolytics, and hypnotics) for mo

https://www.lupop.lu.se/article/social-assistance-and-mental-health-evidence-longitudinal-administrative-data-pharmaceutical - 2025-03-16

Published 10 December 2019 Due to an increasing heterogeneity in retirement transitions, the measurement of retirement age constitutes a major challenge for researchers and policymakers. In order to better understand the concept of retirement age, we compare a series of measures for retirement age assessed on the basis of survey and register data. New publication in Journal of Population Ageing

https://www.lupop.lu.se/article/how-measure-retirement-age-comparison-survey-and-register-data - 2025-03-16

Published 6 December 2019 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 - 2025-03-16

Published 9 December 2019 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 - 2025-03-16

Published 9 December 2019 "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

https://www.lupop.lu.se/article/seminar-project-metropolitan - 2025-03-16

Published 10 December 2019 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

https://www.lupop.lu.se/article/vice-dean-research - 2025-03-16

Published 11 December 2019 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

https://www.lupop.lu.se/article/development-and-challenges-setting-international-bone-infection-registry - 2025-03-16

Published 11 December 2019 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 absol

https://www.lupop.lu.se/article/use-electronic-register-monitoring-incidence-osteoporosis-among-residents-north - 2025-03-16

Published 12 December 2019 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 tum

https://www.lupop.lu.se/article/mortality-patterns-long-term-survivors-childhood-or-adolescent-central-nervous-system-tumour-sweden - 2025-03-16

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

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

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

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

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

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