Published 30 December 2019 Orphan drugs are medicines intended to treat, prevent, or diagnose a rare and serious condition. The collection of pre-marketing safety and efficacy data for orphan drugs is very challenging for several reasons related to the rarity of the diseases. This highlights the need for robust post-marketing evidence generation. Real-world data sources, such as claims databases,

https://www.lupop.lu.se/article/role-healthcare-databases-and-registries-surveillance-orphan-drugs-real-world-setting-italian-case - 2025-02-22

Published 31 December 2019 Patient registries are routinely used in dermatology and psoriasis registries offer pertinent long-term safety information regarding conventional systemic therapies and biologic agents for psoriasis. New publication in Journal of Dermatological Treatment

https://www.lupop.lu.se/article/review-european-registries-psoriasis - 2025-02-22

Published 31 December 2019 Oestrogen receptor-positive (ER+) and human epidermal receptor 2-negative (HER2–) breast cancers are classified as Luminal A or B based on gene expression, but immunohistochemical markers are used for surrogate subtyping. The aims of this study were to examine the agreement between molecular subtyping (MS) and surrogate subtyping and to identify subgroups consisting main

https://www.lupop.lu.se/article/agreement-between-molecular-subtyping-and-surrogate-subtype-classification-contemporary-population - 2025-02-22

Published 1 January 2020 Patient registries, ‘organised systems that use observational methods to collect uniform data on a population defined by a particular disease, condition, or exposure, and that is followed over time’, are potentially valuable sources of data for supporting regulatory decision-making, especially for products to treat rare diseases. Nevertheless, patient registries are greatl

https://www.lupop.lu.se/article/patient-registries-underused-resource-medicines-evaluation - 2025-02-22

Published 1 January 2020 To assess the impact on exposure time and outcome misclassifications, and consequent impact on exposure-outcome associations from treatment episode construction. We investigated the dosage assumptions of 1 unit per day, and 1 DDD per day, versus actual prescribed dosage under different handling of gaps and overlaps of prescriptions. New publication in European Journal of C

https://www.lupop.lu.se/article/methods-constructing-treatment-episodes-and-impact-exposure-outcome-associations - 2025-02-22

Published 2 January 2020 The aim of this study was to examine whether the self‐reported use of analgesics is associated with being a victim of bullying. New publication in Acta Paediatrica

https://www.lupop.lu.se/article/bullying-pain-and-analgesic-use-school-age-children - 2025-02-22

Published 2 January 2020 Sibling comparison designs have long been used to assess causal effects of exposures for which randomized studies are impossible and measurement of all relevant confounding is unobtainable. The idea is to utilize the fact that siblings often share a lot of unobserved variables. Therefore, it is proposed that in certain cases, comparing siblings is equivalent to comparing e

https://www.lupop.lu.se/article/what-causal-interpretation-sibling-comparison-designs - 2025-02-22

Published 3 January 2020 A central element of assimilation theory is that increasing time and number of previous immigrant generations in a host country leaves immigrants and their children more integrated and capable of navigating the host society. However, the underperformance of some immigrant groups in Sweden calls into question this relationship. Additionally, many studies regard intermarriag

https://www.lupop.lu.se/article/time-and-generation-parents-integration-and-childrens-school-performance-sweden-1989-2011 - 2025-02-22

Published 3 January 2020 The Swedish Twin Registry functions as research infrastructure containing information on 216,258 twins born between 1886 and 2015, of whom 86,199 pairs have zygosity determined by DNA, an intrapair similarity algorithm, or being of opposite sex. In essence, practically all twins alive and currently 9 years or older have been invited for participation and donation of DNA on

https://www.lupop.lu.se/article/swedish-twin-registry-content-and-management-research-infrastructure - 2025-02-22

Published 4 January 2020 Periodontal disease is associated with cardiovascular disease (CVD) but it is unknown if periodontal disease severity is associated with asymptomatic carotid plaque. The aim of the current population‐based, observational study was to investigate if signs of periodontal disease are associated with the occurrence of carotid plaque and total plaque area (TPA). New publication

https://www.lupop.lu.se/article/periodontal-disease-associated-carotid-plaque-area-malmo-offspring-dental-study-mods - 2025-02-22

Published 4 January 2020 Implications of study findings include underreporting, prescribing and outcome misclassification, and reduced generalizability to population risk groups, information of importance to epidemiologists and researchers using PDMP data. New publication in Epidemiology

https://www.lupop.lu.se/article/record-linkage-approaches-using-prescription-drug-monitoring-program-and-mortality-data-public - 2025-02-22

Published 5 January 2020 To compare the risk and severity of prostate cancer between men achieving fatherhood by assisted reproduction and men conceiving naturally. New publication in the bmj

https://www.lupop.lu.se/article/risk-prostate-cancer-men-fathering-through-assisted-reproduction-nationwide-population-based-0 - 2025-02-22

Published 5 January 2020 Psychiatric re-hospitalisation rates have been of longstanding interest as health care quality metric for planners and policy makers, but are criticized for not being comparable across hospitals and countries due to measurement unclarities. The objectives of the present study were to explore the interoperability of national electronic routine health care registries of six

https://www.lupop.lu.se/article/using-national-electronic-health-care-registries-comparing-risk-psychiatric-re-hospitalisation-six - 2025-02-22

Published 6 January 2020 The purpose of this study was to report on the prevalence and incidence of mild cognitive impairment (MCI) across age, sex, and subtypes according to various criteria in a population-based sample. New publication in Dementia and Geriatric Cognitive Disorders

https://www.lupop.lu.se/article/prevalence-and-incidence-mild-cognitive-impairment-across-subtypes-age-and-sex - 2025-02-22

Published 6 January 2020 Although the registers in this collaboration have similar designs, we found numerous differences in the variables collected. This survey of the status quo of current pregnancy registers is the first step towards identifying data collected uniformly across registers in order to facilitate joint analyses. New publication in Arthritis Research & Theraphy

https://www.lupop.lu.se/article/european-network-pregnancy-registers-rheumatology-eunep-overview-procedures-and-data-collection - 2025-02-22

Published 13 December 2017 Public panel discussion arranged by the Pufendorf Institute for Advanced Studies For more information and registration, please go to https://www.lu.se/event/public-panel-discussion-from-policy-to-practice-data-management-and-infrastructure.

https://www.lupop.lu.se/article/policy-practice-data-management-and-infrastructure - 2025-02-22

Published 7 January 2020 There are large discrepancies in the transport sector along gender lines in travel patterns and means of transportation used, but also in attitudes and norms among citizens, planners and decision-makers, with women generally more positive towards measures involving the lowering CO2 emissions. At the same time, the number of women involved in transport-related decisions is

https://www.lupop.lu.se/article/investigating-link-between-transport-sustainability-and-representation-women-swedish-local - 2025-02-22

Published 7 January 2020 We report the development of a new disease registry on SMA as the result of a collaboration among three national networks in United States, Italy, and United Kingdom in partnership with a biotechnology company and with the support of advocacy groups. New publication in Neuromuscular Disorders

https://www.lupop.lu.se/article/development-academic-disease-registry-spinal-muscular-atrophy - 2025-02-22

Published 8 January 2020 Screening for abdominal aortic aneurysm (AAA) in elderly men reduces aneurysm related mortality. AAA is commonly defined as an infrarenal aortic diameter (IAD) of ≥30 mm, which is based on the definition of an arterial aneurysm as a focal dilation of 150% or more compared to the expected diameter of about 20 mm. The IAD has been shown to correlate to body surface area (BSA

https://www.lupop.lu.se/article/significant-correlation-between-body-surface-area-and-infrarenal-aortic-diameter-detected-large - 2025-02-22

Published 8 January 2020 Analysing personal data is a privilege requiring researchers to safeguard data and to use data wisely. Safeguarding data means protecting the identity of individuals. Using data wisely means using, reusing, and sharing data to their maximum potential. More researchers should be given safe access to previously collected data from expensive clinical trials and laboratory or

https://www.lupop.lu.se/article/sharing-data-safely-while-preserving-privacy - 2025-02-22