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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 logistic regression with missin

https://www.lupop.lu.se/article/multinomial-logistic-regression-missing-outcome-data-application-cancer-subtypes - 2025-10-07

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 recruited via the Swedish stat

https://www.lupop.lu.se/article/genotype-environment-correlation-and-its-relation-personality-twin-and-family-study - 2025-10-07

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 probabilities. Read more at https:

https://www.lupop.lu.se/article/multiple-imputation-based-sensitivity-analysis-approach-data-subject-missing-not-random - 2025-10-07

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 healthcare. Read more at h

https://www.lupop.lu.se/article/visualizing-healthcare-system-variability-and-resilience-longitudinal-study-patient-movements - 2025-10-07

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://pubmed.ncbi.nlm.nih.gov/32699

https://www.lupop.lu.se/article/patient-reported-outcome-measures-new-application-swedish-renal-registry-health-related-quality-life - 2025-10-07

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 Cataract Register, PECARE,

https://www.lupop.lu.se/article/parents-reported-experiences-when-having-child-cataract-important-aspects-self-management-obtained - 2025-10-07

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 födelseland kommer att inhämta

https://www.lupop.lu.se/article/valdsbrott-i-skane - 2025-10-07

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 - 2025-10-07

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 - 2025-10-07

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 - 2025-10-07

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 - 2025-10-07

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 - 2025-10-07

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 - 2025-10-07

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 - 2025-10-07

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 - 2025-10-07

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 - 2025-10-07

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 - 2025-10-07

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 - 2025-10-07

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 - 2025-10-07

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 - 2025-10-07