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Orphanet J Rare Dis
January 2025
Department of Diabetes, Endocrinology and Metabolism, University Hospitals Birmingham NHS Foundation Trust, Queen Elizabeth Hospital, Birmingham, B15 2TH, UK.
Background: Alström syndrome (AS) is a recessively inherited genetic condition which is ultra-rare and extremely complex. Symptoms include retinal dystrophy, nystagmus, photophobia, hearing loss, obesity, insulin resistance, diabetes and cardiomyopathy. The condition is progressive, but it is important to note that not all the complications associated with AS occur in everyone affected.
View Article and Find Full Text PDFRes Involv Engagem
January 2025
Department of Public Health, Faculty of Health, Aarhus University, Aarhus, Denmark.
Background: Involving parents in decisions about the care of their infant is common practice in most neonatal intensive care units. However, involvement is less common in neonatal research and a gap appears to exist in understanding the process of patient and public involvement. The aim of this study was to explore parents and researchers' experiences of patient and public involvement in a neonatal research project.
View Article and Find Full Text PDFInfect Chemother
December 2024
Institute for Health and Society, Hanyang University, Seoul, Korea.
Background: The Korean government is implementing policy to reduce medical costs and improve treatment related for human immunodeficiency virus (HIV) patients. The level of cost reduction and the benefits provided vary depending on how individuals with HIV utilize the system. This study aims to determine exact HIV prevalence by analyzing healthcare utilization patterns and examining differences in healthcare usage based on how individuals pay for their medical expenses.
View Article and Find Full Text PDFInt J Equity Health
January 2025
Discipline of Podiatry, School of Health Sciences, Western Sydney University, Dharawal Country, Campbelltown, NSW, Australia.
Increasing use of co-design concepts and buzzwords create risk of generating 'co-design branded' healthcare research and healthcare system design involving insincere, contrived, coercive engagement with First Nations Peoples. There are concerns that inauthenticity in co-design will further perpetuate and ingrain harms inbuilt to colonial systems.Co-design is a tool that inherently must truly reposition power to First Nations Peoples, engendering both respect and ownership.
View Article and Find Full Text PDFEnter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!