Published 13 October 2020 During the last 4 decades, registration of patients with primary immunodeficiencies (PID) has played an essential role in different aspects of these diseases worldwide including epidemiological indexes, policymaking, quality controls of care/life, facilitation of genetic studies and clinical trials as well as improving our understanding about the natural history of the di

https://www.lupop.lu.se/article/global-systematic-review-primary-immunodeficiency-registries-0 - 2025-02-09

Published 13 October 2020 Public preregistration of study analysis plans (SAPs) is widely recognized for clinical trials, but adopted to a much lesser extent in observational studies. Registration of SAPs prior to analysis is encouraged to not only increase transparency and exactness but also to avoid positive finding bias and better standardize outcome modeling. Efforts to generally standardize o

https://www.lupop.lu.se/article/registering-study-analysis-plans-saps-dissecting-your-data-updating-and-standardizing-outcome - 2025-02-09

Published 14 October 2020 Research Infrastructures (RIs) are tools for scientific research that have received increased attention in science policy in Europe in recent years, including the launch of specific governance bodies and a structured process of prioritization and organization of RI projects in the making. But there is no commonly accepted definition of what RIs are, and the category is bo

https://www.lupop.lu.se/article/research-infrastructures-europe-hype-and-field - 2025-02-09

Published 14 October 2020 Accurately measuring the incidence of major postoperative complications is essential for funding and reimbursement of healthcare providers, for internal and external benchmarking of hospital performance and for valid and reliable public reporting of outcomes. Actual or surrogate outcomes data are typically obtained by one of three methods: clinical quality registries, cli

https://www.lupop.lu.se/article/towards-national-perioperative-clinical-quality-registry-diagnostic-accuracy-administrative-data - 2025-02-09

Published 15 October 2020 There is an increased interest in the analysis of large, national palliative care data sets including patient reported outcomes (PROs). No study has investigated if it was best to include or exclude data from services with low response rates in order to obtain the patient reported outcomes most representative of the national palliative care population. Thus, the aim of th

https://www.lupop.lu.se/article/should-analyses-large-national-palliative-care-data-sets-patient-reported-outcomes-pros-be - 2025-02-09

Published 15 October 2020 Individual clinical trials and cohort studies are a useful source of data, often under-utilised once a study has ended. Pooling data from multiple sources could increase sample sizes and allow for further investigation of treatment effects; even if the original trial did not meet its primary goals. Through the MASTERPLANS (MAximizing Sle ThERapeutic PotentiaL by Applicati

https://www.lupop.lu.se/article/challenges-data-integration-heterogeneity-and-complexity-clinical-trials-and-patient-registries - 2025-02-09

Published 16 October 2020 Robust (inter-)national breast implant registries are important. For some, registries are an administrative burden, for others they represent a solution for the discussions involving breast implants. The DBIR is one of the first national, opt-out, clinical registries of breast implants, providing information for clinical auditing and product recall. Four years after its i

https://www.lupop.lu.se/article/national-dutch-breast-implant-registry-user-reported-experiences-and-importance - 2025-02-09

Published 16 October 2020 Increasing attention has been given to the long-term effects of assisted reproductive technology (ART). This study assessed the validity and completeness of ART as registered in the Medical Birth Registry of Norway (MBRN) using drug prescription data from the Norwegian Prescription Database (NorPD) as reference. Read more at https://journals.lww.com/epidem/Abstract/2020/0

https://www.lupop.lu.se/article/validation-assisted-reproductive-technology-medical-birth-registry-norway-versus-norwegian - 2025-02-09

Published 17 October 2020 While the primary role of central cancer registries in the United States is to provide vital information needed for cancer surveillance and control, these registries can also be leveraged for population-based epidemiologic studies of cancer survivors. Read more at https://cebp.aacrjournals.org/content/cebp/29/9/1699.full.pdf?casa_token=eFOpkXwydrgAAAAA:9zvXp0TgWAkIvMk8JLb

https://www.lupop.lu.se/article/utilizing-seer-cancer-registries-population-based-cancer-survivor-epidemiologic-studies-feasibility - 2025-02-09

Published 20 March 2018 Den nya lagen innehåller kompletterande bestämmelser till EU:s dataskyddsförordning (GDPR). Om riksdagen antar regeringens förslag så börjar dataskyddslagen gälla den 25 maj, samtidigt som dataskyddsförordningen. Läs mer på bloggen "Projekt för framtida hantering av personuppgifter".

https://www.lupop.lu.se/article/regeringen-foreslar-ny-lag-som-ska-komplettera-gdpr - 2025-02-09

Published 17 October 2020 Severe asthma exerts a disproportionately heavy burden on patients and health care. Due to the heterogeneity of the severe asthma population, many patients need to be evaluated to understand the clinical features and outcomes of severe asthma in order to facilitate personalised and targeted care. The International Severe Asthma Registry (ISAR) is a multi-country registry

https://www.lupop.lu.se/article/international-severe-asthma-registry-isar-protocol-global-registry - 2025-02-09

Published 18 October 2020 In this article, several independent populations following exponential distribution with common location parameter and unknown and unequal scale parameters are considered. From these populations, several independent samples of generalized order statistics (gos) are drawn. Under the setup of gos, the problem of estimation of common location parameter is discussed and vario

https://www.lupop.lu.se/article/estimation-common-location-parameter-several-heterogeneous-exponential-populations-based-generalized - 2025-02-09

Published 18 October 2020 Information about how risk for bipolar disorder is transmitted across generations and how parental risk for bipolar disorder relates to their children's risk for schizophrenia and major depression is limited. Read more at https://pubmed.ncbi.nlm.nih.gov/32186664/

https://www.lupop.lu.se/article/extended-swedish-national-adoption-study-bipolar-disorder-illness-and-cross-generational-familial - 2025-02-09

Published 19 October 2020 Non-Alcoholic Fatty Liver Disease (NAFLD), a progressive liver disease that is closely associated with obesity, type 2 diabetes, hypertension and dyslipidaemia, represents an increasing global public health challenge. There is significant variability in the disease course: the majority exhibit only fat accumulation in the liver but a significant minority develop a necroin

https://www.lupop.lu.se/article/european-nafld-registry-real-world-longitudinal-cohort-study-nonalcoholic-fatty-liver-disease - 2025-02-09

Published 19 October 2020 This paper measures consumption expenditures using registry data on income and asset holdings in Sweden. We show how a registry-based measure complements traditional survey measures of consumption and can alleviate some critical limitations. We describe the construction of our measure, which builds on prior work and exploits the identity coming from the household budget c

https://www.lupop.lu.se/article/value-registry-data-consumption-analysis-application-health-shocks - 2025-02-09

Published 20 October 2020 Pelvic floor disorders (PFDs) are important public health concerns due to their increasing prevalence. Hence, there is an increasing need for developing systematically collected quality data to assist appropriate clinical decision‐making. This study aimed to develop a core data set for patients with PFDs based on the PFDs registry. Read more at https://onlinelibrary.wiley

https://www.lupop.lu.se/article/development-core-data-set-pelvic-floor-disorder-patients-registry - 2025-02-09

Published 20 October 2020 Dementia was identified as a priority area for the development of a Clinical Quality Registry (CQR) in Australia in 2016. The Australian Dementia Network (ADNeT) Registry is being established as part of the ADNeT initiative, with the primary objective of collecting data to monitor and enhance the quality of care and patient outcomes for people diagnosed with either dement

https://www.lupop.lu.se/article/protocol-clinical-quality-registry-dementia-and-mild-cognitive-impairment-mci-australian-dementia - 2025-02-09

Published 21 October 2020 Independent disease registries for pre-and post-approval of novel treatments for rare diseases are increasingly important for healthcare professionals, patients, regulators and the pharmaceutical industry. Current registries for rare diseases to evaluate orphan drugs are mainly set up and owned by the pharmaceutical industry which leads to unacceptable conflicts of intere

https://www.lupop.lu.se/article/registries-orphan-drugs-generating-evidence-or-marketing-tools - 2025-02-09

Published 21 March 2018 Ragnar Söderbergs stiftelse finansierar projekt vid Stockholms och Lunds Universitet En framgångsrik digitalisering resulterar i ett unikt dataset som kastar nytt ljus på svensk industrihistoria. Planen är att göra datasetet offentligt, och bedömningen är att det kan bli internationellt uppmärksammat och användas i historiska studier av industrialisering.Läs mer här.

https://www.lupop.lu.se/article/projekt-att-digitalisera-svensk-industridata-beviljas-13-miljoner-kronor - 2025-02-09

Published 21 October 2020 Recruitment for Alzheimer's disease (AD)-focused studies, particularly prevention studies, is challenging due to the public's lack of awareness about study opportunities coupled with studies' inclusion and exclusion criteria, resulting in a high screen fail rate. Read more at https://pubmed.ncbi.nlm.nih.gov/32920626/

https://www.lupop.lu.se/article/alzheimers-prevention-registry-large-internet-based-participant-recruitment-registry-accelerate - 2025-02-09