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Development of the Asian Transplant Registry Under the Asian Society of Transplantation

Published 6 October 2020 In the Asian region, no international organ transplantation registry exists. Individual centers maintain their own database, or some countries developed a national registration system. To promote collaboration among Asian transplantation societies, the Asian Society of Transplantation (AST) has developed an international transplantation registry for the Asian countries tha

https://www.lupop.lu.se/article/development-asian-transplant-registry-under-asian-society-transplantation - 2025-02-09

A Bayesian hierarchical approach for multiple outcomes in routinely collected healthcare data

Published 7 October 2020 Clinical trials are the standard approach for evaluating new treatments, but may lack the power to assess rare outcomes. Trial results are also necessarily restricted to the population considered in the study. The availability of routinely collected healthcare data provides a source of information on the performance of treatments beyond that offered by clinical trials, but

https://www.lupop.lu.se/article/bayesian-hierarchical-approach-multiple-outcomes-routinely-collected-healthcare-data - 2025-02-09

Sensitivity analysis for clinical trials with missing continuous outcome data using controlled multiple imputation: A practical guide

Published 7 October 2020 Missing data due to loss to follow‐up or intercurrent events are unintended, but unfortunately inevitable in clinical trials. Since the true values of missing data are never known, it is necessary to assess the impact of untestable and unavoidable assumptions about any unobserved data in sensitivity analysis. This tutorial provides an overview of controlled multiple imputa

https://www.lupop.lu.se/article/sensitivity-analysis-clinical-trials-missing-continuous-outcome-data-using-controlled-multiple - 2025-02-09

Empirical use of causal inference methods to evaluate survival differences in a real‐world registry vs those found in randomized clinical trials

Published 8 October 2020 With heighted interest in causal inference based on real‐world evidence, this empirical study sought to understand differences between the results of observational analyses and long‐term randomized clinical trials. We hypothesized that patients deemed “eligible” for clinical trials would follow a different survival trajectory from those deemed “ineligible” and that this fa

https://www.lupop.lu.se/article/empirical-use-causal-inference-methods-evaluate-survival-differences-real-world-registry-vs-those - 2025-02-09

A bivariate logistic regression model based on latent variables

Published 8 October 2020 Bivariate observations of binary and ordinal data arise frequently and require a bivariate modeling approach in cases where one is interested in aspects of the marginal distributions as separate outcomes along with the association between the two. We consider methods for constructing such bivariate models based on latent variables with logistic marginals and propose a mode

https://www.lupop.lu.se/article/bivariate-logistic-regression-model-based-latent-variables - 2025-02-09

Multinomial logistic regression with missing outcome data: An application to cancer subtypes

Published 9 October 2020 Many diseases such as cancer and heart diseases are heterogeneous and it is of great interest to study the disease risk specific to the subtypes in relation to genetic and environmental risk factors. However, due to logistic and cost reasons, the subtype information for the disease is missing for some subjects. In this article, we investigate methods for multinomial logist

https://www.lupop.lu.se/article/multinomial-logistic-regression-missing-outcome-data-application-cancer-subtypes - 2025-02-09

Genotype-Environment Correlation and Its Relation to Personality - A Twin and Family Study

Published 9 October 2020 The aim of the study was to examine the Family and School Psychosocial Environment (FSPE) questionnaire in relation to a possible genotype-environment correlation and genetic mediation between the FSPE variables and personality variables, assessed by the Junior Eysenck Personality Questionnaire. A sample of 506 Swedish children aged 10-20 years from 253 families were recru

https://www.lupop.lu.se/article/genotype-environment-correlation-and-its-relation-personality-twin-and-family-study - 2025-02-09

A multiple imputation‐based sensitivity analysis approach for data subject to missing not at random

Published 10 October 2020 Missingness mechanism is in theory unverifiable based only on observed data. If there is a suspicion of missing not at random, researchers often perform a sensitivity analysis to evaluate the impact of various missingness mechanisms. In general, sensitivity analysis approaches require a full specification of the relationship between missing values and missingness probabil

https://www.lupop.lu.se/article/multiple-imputation-based-sensitivity-analysis-approach-data-subject-missing-not-random - 2025-02-09

Visualizing healthcare system variability and resilience: a longitudinal study of patient movements following discharge from a Swedish psychiatric clinic

Published 10 October 2020 As healthcare becomes increasingly complex, new methods are needed to identify weaknesses in the system that could lead to increased risk. Traditionally, the focus for patient safety is to study incident reports and adverse events, but that starting point has been contested with a new era of safety investigations: the analysis of everyday clinical work, and the resilient

https://www.lupop.lu.se/article/visualizing-healthcare-system-variability-and-resilience-longitudinal-study-patient-movements - 2025-02-09

Patient-reported outcome measures as a new application in the Swedish Renal Registry: health-related quality of life through RAND-36

Published 11 October 2020 Although patient-reported outcome measures (PROMs) are gaining increased interest in developing health care quality and are a useful tool in person-centered care, their use in routine care is still limited. The aim of this study is to describe the implementation and initial results of PROMs via the Swedish Renal Registry (SRR) on a national level. Read more at https://pub

https://www.lupop.lu.se/article/patient-reported-outcome-measures-new-application-swedish-renal-registry-health-related-quality-life - 2025-02-09

Parents’ Reported Experiences When Having a Child with Cataract—Important Aspects of Self-Management Obtained from the Pediatric Cataract Register (PECARE)

Published 11 October 2020 Parents are a crucial part in the care of children with pediatric cataract. The aim of this study was to explore and explain sense of coherence, family self-efficacy, perceived social support, fatigue and parent reported experiences (PREM), in order to improve clinical care. Questionnaires were sent to the parents of children registered in the Swedish national Pediatric C

https://www.lupop.lu.se/article/parents-reported-experiences-when-having-child-cataract-important-aspects-self-management-obtained - 2025-02-09

Våldsbrott i Skåne

Published 12 October 2020 Det övergripande syftet med projektet är att kartlägga våldsbrottstrenden i Region Skåne, utforska vilka skador som offren av våldsbrott får och ifall de avlider, vad dödsorsaken är. Syftet är även att titta på vilka behandlingar som dessa offer fått inom akutsjukvården samt undersöka vilka karakteristika som offer för våldsbrott har. Uppgifter om forskningspersonens föde

https://www.lupop.lu.se/article/valdsbrott-i-skane - 2025-02-09

Så ska sofistikerad dataanalys ge oss bättre vård

Published 20 March 2018 Dataanalys blir ett allt viktigare verktyg inom biologiforskning. Genom att titta på mönster i data från en stor mängd människor ökar kunskapen om hur olika individer fungerar och det leder till en allt mer skräddarsydd vård. Jacob Bergstedt är doktorand i reglerteknik vid Lunds Universitet. Läs mer om hans forskning här.

https://www.lupop.lu.se/article/sa-ska-sofistikerad-dataanalys-ge-oss-battre-vard - 2025-02-09

Using Decision Rules to Assess Occupational Exposure in Population-Based Studies.

Published 12 October 2020 Population-based studies increasingly link task-based occupational questionnaire responses collected from subjects to exposure estimates via transparent, programmable decision rules. We reviewed recent applications and methodological developments of rule-based approaches. Read more at https://europepmc.org/article/med/31297745

https://www.lupop.lu.se/article/using-decision-rules-assess-occupational-exposure-population-based-studies - 2025-02-09

Global systematic review of primary immunodeficiency registries

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

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

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

Research Infrastructures in Europe: The Hype and the Field

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

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

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

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

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

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

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