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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.
Populism and medical advocacy: The case of hydroxychloroquine prior the 2020 United States presidential election.
Soc Sci Med
January 2025
Department of Social Sciences, Federal University of Juiz de Fora, Juiz de Fora, Minas Gerais, Brazil. Electronic address:
Leading up to the 2020 U.S. presidential elections, the scientific consensus on hydroxychloroquine's ineffectiveness in treating COVID-19 was dismissed by Executive branch scientists, who promoted it as both a therapeutic solution and a political tool.
View Article and Find Full Text PDFDecentralized clinical trials are better for the participants and for the planet: the case study of a double-blind randomized controlled trial in Singapore (PROMOTE study).
Front Public Health
January 2025
Clinical Research Unit, Nestlé Research, Société des Produits Nestlé S.A., Lausanne, Switzerland.
Introduction: Novel technologies have enabled the decentralization of many aspects of clinical trials, but little research has been done on the impact of these changes on the participant experience, trial operations, or the environment.
Methods: A fully decentralized clinical trial conducted in Singapore is used as a case study to evaluate the operational outcomes, environmental impact (via life cycle assessment), and participants experience (qualitative interviews) of the decentralized model compared to a traditional study with in-person visits.
Results: The decentralized study achieved high participant retention rates (97%) and high completion rates for clinical data, even for biological samples.
Balancing the right to health and commercial speech: the approach of Argentina's Supreme Court.
Health Promot Int
January 2025
LLM Georgetown Law, Washington, DC, United States.
Noncommunicable diseases (NCDs) cause significant human and economic costs globally. Each year, 17 million people die from an NCD before age 70. The burden of NCDs is associated with socioenvironmental, cultural factors and social behavior, including modifiable risk factors like tobacco use, unhealthy diets, physical inactivity and alcohol consumption.
View Article and Find Full Text PDFPolitical participation and voluntary associations : A hypergraph case study.
PLoS One
January 2025
Laboratoire d'Anthropologie Sociale, Ecole des Hautes Etudes en Sciences Sociales, Paris, France.
Civic organizations, ranging from interest groups to voluntary associations, significantly influence policy formation in representative democracies. This work presents a local case study that examines the relationship between voluntary associations and local political institutions in a village with nearly two thousand residents. Traditionally, sociologists' approaches have focused on individual characteristics such as age, gender, or socio-professional status.
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