Since January 2016, the Mahidol Oxford Tropical Medicine Research Unit (MORU) has trialled a data-sharing policy where requests to access research datasets are processed through a Data Access Committee. In this paper, we share our experiences establishing data management systems and data-sharing infrastructure including a data-sharing policy, data access committee and related procedures. We identified a number of practical and ethical challenges including requests for datasets collected without specific or broad consent to data sharing and requests from pharmaceutical companies for data to support drug registration applications. We also encountered significant resource constraints which required the development of appropriate human resources and infrastructure. We suggest a research agenda to promote responsible and equitable data sharing while safeguarding the rights and interests of research participants and researchers.
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http://dx.doi.org/10.1007/s41649-017-0029-5 | DOI Listing |
Open Res Eur
January 2025
Heidelberger Institut für Global Health, Universitätsklinikum Heidelberg, Heidelberg, Baden-Württemberg, 69120, Germany.
Introduction: The benefits of sharing participant-level data, including clinical or epidemiological data, genomic data, high-dimensional imaging data, or human-derived samples, from biomedical studies have been widely touted and may be taken for granted. As investments in data sharing and reuse efforts continue to grow, understanding the cost and positive and negative effects of data sharing for research participants, the general public, individual researchers, research and development, clinical practice, and public health is of growing importance. In this scoping review, we will identify and summarize existing evidence on the positive and negative impacts and costs of data sharing and how they are measured.
View Article and Find Full Text PDFFront Public Health
January 2025
College of Liberal Arts, Dankook University, Cheonan-si, Chungcheongnam-do, Republic of Korea.
Introduction: Fine dust exposure has been reported to affect patients with prostate cancer, making it crucial to understand how environmental pollutants impact health. This study aimed to determine the risk of prostate cancer in South Korea associated with moderate levels of fine dust (PM) exposure.
Methods: We analyzed data from 20,430 individuals in the National Health Insurance Sharing Service database from 2010 to 2020, comparing a new prostate cancer group ( = 4,071, 19.
BMC Pulm Med
January 2025
Graduate Institute of Clinical Medicine, College of Medicine, National Taiwan University, Taipei City, Taiwan.
Background: Since 2021, COVID-19 has had a substantial impact on global health and continues to contribute to serious health outcomes. In Taiwan, most research has focused on hospitalized patients or mortality cases, leaving important gaps in understanding the broader effects of the disease and identifying individuals at high risk. This study aims to investigate the risk factors for disease progression through a nationwide population-based cohort study on COVID-19 in Taiwan.
View Article and Find Full Text PDFBiomolecules
December 2024
Department of Anatomy and Developmental Biology, Faculty of Medicine, Shimane University, 89-1 Enya-cho, Izumo 693-8501, Shimane, Japan.
The prognosis of spinal cord injury (SCI) is closely linked to secondary injury processes, predominantly driven by neuroinflammation. Interleukin-18 (IL-18) plays a pivotal role in this inflammatory response. In previous work, we developed an anti-IL-18 antibody capable of neutralizing the active form of IL-18.
View Article and Find Full Text PDFBMC Nurs
January 2025
Department of Nursing and Physiotherapy, University of the Balearic Islands, Palma, Balearic Islands, Spain.
Background: Since the declaration of the COVID-19 pandemic in March 2020 and throughout the health crisis, health authorities recommended restriction measures to minimize the risk of contagion and avoid the collapse of health centers. The restrictive health and safety measures conditioned the way in which patients were cared for, as well as their social and family life. The purpose of the study was to explore patients and caregivers' perception of family care and support during hospitalization in the context of the COVID-19 pandemic in a Manacor hospital.
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