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Identification of strengths and weaknesses of the healthcare system for persons living with rare diseases in Catalonia (Spain), and recommendations to improve its comprehensive attention: the "acERca las enfermedades raras" project.
Orphanet J Rare Dis
January 2025
Laboratory of Neurogenetics and Molecular Medicine, Center for Genomic Sciences in Medicine, Institut de Recerca Sant Joan de Déu, Únicas SJD Center, Hospital Sant Joan de Déu, Barcelona, Spain.
Background: Rare diseases (RDs) are a heterogeneous group of complex and low-prevalence conditions in which the time to establish a definitive diagnosis is often too long. In addition, for most RDs, few to no treatments are available and it is often difficult to find a specialized care team.
Objectives: The project "acERca las enfermedades raras" (in English: "bringing RDs closer") is an initiative primary designed to generate a consensus by a multidisciplinary group of experts to detect the strengths and weaknesses in the public healthcare system concerning the comprehensive care of persons living with a RD (PLWRD) in the region of Catalonia, Spain, where a Network of Clinical Expert Units (Xarxa d'Unitats de Expertesa Clínica or XUEC) was created and is being implemented since 2015.
Addressing racial and ethnic disparities in premature exits from permanent supportive housing among residents with substance use disorders.
BMC Public Health
January 2025
Center for the Study of Healthcare Innovation, Implementation, and Policy (CSHIIP), Department of Veteran Affairs (VA) Greater Los Angeles, Los Angeles, CA, USA.
Background: Permanent supportive housing (PSH) is an evidence-based practice for reducing homelessness that subsidizes permanent, independent housing and provides case management-including linkages to health services. Substance use disorders (SUDs) are common contributing factors towards premature, unwanted ("negative") PSH exits; little is known about racial/ethnic differences in negative PSH exits among residents with SUDs. Within the nation's largest PSH program at the Department of Veterans Affairs (VA), we examined relationships among SUDs and negative PSH exits (for up to five years post-PSH move-in) across racial/ethnic subgroups.
View Article and Find Full Text PDFPatients' loyalty to primary care institutions and associated factors in China: a cross-sectional study.
BMC Health Serv Res
January 2025
School of Public Health, Tongji Medical College, Huazhong University of Science and Technology, No. 13 Hangkong Road, Wuhan, Hubei, 430030, China.
Objectives: This study aimed to examine patients' loyalty and explore some associated factors among PCIs in this country.
Methods: A multistage stratified random sampling method was employed to collect data for this study. A structured self-administered questionnaire was distributed to 2,697 patients who had ever involved in seeking healthcare from PCIs across China between July and September in 2021.
Factors influencing role preferences in decision-making of healthy women with BRCA1/2 pathogenic variants: subanalysis from a randomised controlled decision coaching trial.
BMC Cancer
January 2025
Faculty of Medicine, University of Cologne and Institute for Health Economics and Clinical Epidemiology, University Hospital Cologne, Cologne, Germany.
Background: Patients who actively engage in their medical decision-making processes can experience better health outcomes. This exploratory study aimed to identify predictors of preferred and actual roles in decision-making in healthy women with BRCA1/2 pathogenic variants (PVs).
Methods: Women with BRCA1/2 PVs without a history of breast and/or ovarian cancer were recruited in six centres across Germany.
TaWI12 may be involved in pistillody and leaf cracking in wheat.
BMC Plant Biol
January 2025
Triticeae Research Institute, Sichuan Agricultural University, Chengdu, 611130, China.
TaWI12 is a member of the wound-induced (WI) protein family, which has been implicated in plant stress responses and developmental processes. Wheat (Triticum aestivum L.) is a crucial staple crop upon which human sustenance relies.
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