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Global systematic review of primary immunodeficiency registries

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 disease and the immune syste

https://www.lupop.lu.se/article/global-systematic-review-primary-immunodeficiency-registries-0 - 2025-10-03

Registering Study Analysis Plans (SAPs) Before Dissecting Your Data—Updating and Standardizing Outcome Modeling

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 outcome modeling, which can

https://www.lupop.lu.se/article/registering-study-analysis-plans-saps-dissecting-your-data-updating-and-standardizing-outcome - 2025-10-03

Research Infrastructures in Europe: The Hype and the Field

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 both very varied and lacks h

https://www.lupop.lu.se/article/research-infrastructures-europe-hype-and-field - 2025-10-03

Towards a national perioperative clinical quality registry: The diagnostic accuracy of administrative data in identifying major postoperative complications

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, clinical audit, or administra

https://www.lupop.lu.se/article/towards-national-perioperative-clinical-quality-registry-diagnostic-accuracy-administrative-data - 2025-10-03

Should analyses of large, national palliative care data sets with patient reported outcomes (PROs) be restricted to services with high patient participation? A register-based study

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 this study was to investigat

https://www.lupop.lu.se/article/should-analyses-large-national-palliative-care-data-sets-patient-reported-outcomes-pros-be - 2025-10-03

The challenges in data integration – heterogeneity and complexity in clinical trials and patient registries of Systemic Lupus Erythematosus

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 Application of Novel and Stratified

https://www.lupop.lu.se/article/challenges-data-integration-heterogeneity-and-complexity-clinical-trials-and-patient-registries - 2025-10-03

The National Dutch Breast Implant Registry: user-reported experiences and importance

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 introduction, it is time to

https://www.lupop.lu.se/article/national-dutch-breast-implant-registry-user-reported-experiences-and-importance - 2025-10-03

Validation of Assisted Reproductive Technology in the Medical Birth Registry of Norway Versus the Norwegian Prescription Database

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/2020/09000/Validation_of_Assiste

https://www.lupop.lu.se/article/validation-assisted-reproductive-technology-medical-birth-registry-norway-versus-norwegian - 2025-10-03

Utilizing SEER Cancer Registries for Population-Based Cancer Survivor Epidemiologic Studies: A Feasibility Study

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:9zvXp0TgWAkIvMk8JLbNF0zwBjqpBdIp56TlGhwy_4eqG

https://www.lupop.lu.se/article/utilizing-seer-cancer-registries-population-based-cancer-survivor-epidemiologic-studies-feasibility - 2025-10-03

International severe asthma registry (ISAR): protocol for a global registry

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 project initiated to aid i

https://www.lupop.lu.se/article/international-severe-asthma-registry-isar-protocol-global-registry - 2025-10-03

Estimation of common location parameter of several heterogeneous exponential populations based on generalized order statistics

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 various estimators of common lo

https://www.lupop.lu.se/article/estimation-common-location-parameter-several-heterogeneous-exponential-populations-based-generalized - 2025-10-03

An Extended Swedish National Adoption Study of Bipolar Disorder Illness and Cross-Generational Familial Association With Schizophrenia and Major Depression

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 - 2025-10-03

The European NAFLD Registry: A real-world longitudinal cohort study of nonalcoholic fatty liver disease

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 necroinflammatory form of the dis

https://www.lupop.lu.se/article/european-nafld-registry-real-world-longitudinal-cohort-study-nonalcoholic-fatty-liver-disease - 2025-10-03

The value of registry data for consumption analysis: An application to health shocks

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 constraint between consumpt

https://www.lupop.lu.se/article/value-registry-data-consumption-analysis-application-health-shocks - 2025-10-03

Development of a core data set for pelvic floor disorder patients registry

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.com/doi/full/10.1111/luts

https://www.lupop.lu.se/article/development-core-data-set-pelvic-floor-disorder-patients-registry - 2025-10-03

The protocol of a clinical quality registry for dementia and mild cognitive impairment (MCI): the Australian dementia network (ADNeT) Registry

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 dementia or Mild Cognitive Impai

https://www.lupop.lu.se/article/protocol-clinical-quality-registry-dementia-and-mild-cognitive-impairment-mci-australian-dementia - 2025-10-03

Registries for orphan drugs: generating evidence or marketing tools?

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 interest. To ensure independence

https://www.lupop.lu.se/article/registries-orphan-drugs-generating-evidence-or-marketing-tools - 2025-10-03

Projekt för att digitalisera svensk industridata beviljas 1,3 miljoner kronor

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 - 2025-10-03

The Alzheimer's Prevention Registry: A Large Internet-Based Participant Recruitment Registry to Accelerate Referrals to Alzheimer's-Focused Studies

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 - 2025-10-03