Challenges and solutions to complex data governance issues in cross-national, cross-sectoral, multidisciplinary real world health research: a descriptive overview.

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Tác giả: Anthony Bolger, Julie Connelly, Kieran Flynn, Evelyn Fox, Miriam Galvin, Frances Gibbons, Orla Hardiman, Lucy Hederman, Mark Heverin, Sinéad Impey, Éanna Mac Domhnaill, Robert Mcfarlane, Declan McKibben, Dara Meldrum, Deirdre Murray, Matthew Nicholson, Imelda O'Keefe, Ciara O'Meara, Gaye Stephens, Leonard Van Den Berg, Jet Van Dijk

Ngôn ngữ: eng

Ký hiệu phân loại:

Thông tin xuất bản: England : Amyotrophic lateral sclerosis & frontotemporal degeneration , 2025

Mô tả vật lý:

Bộ sưu tập: NCBI

ID: 734933

Real-world clinical data is generated during clinical engagements. The collection and further processing and mining of clinical information requires consents and navigation of necessary and important data governance processes. PRECISION ALS is an academic industry programme that collects, collates and analyses clinical and para-clinical data from patients with ALS across 10 European sites. The infrastructure of PRECISION ALS represents a complex interplay of the clinical, governance, and technical frameworks. Incorporation of infrastructural and operational measures enables sophisticated cross-national, cross-sectoral and cross disciplinary health research. PRECISION ALS has established a range of domain expertise, technologies, governance and clinical data management practices that can be applied throughout the life cycle of patient data from generation, collation, delivery and secure storage for advanced analytics. PRECISION ALS is designed to move the field of ALS research to a true Precision Medicine based approach toward new and more effective therapeutics.
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