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Building Clinical and Research Delivery Networks: A Blue Print for Multidisciplinary Management and Consensus in Wilson Disease
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Building Clinical and Research Delivery Networks: A Blue Print for Multidisciplinary Management and Consensus in Wilson Disease
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Journal Article
Building Clinical and Research Delivery Networks: A Blue Print for Multidisciplinary Management and Consensus in Wilson Disease
2025
Overview
[...]many areas of patient care are still reliant on older data with case series, and many articles still lack sufficient statistical power for conclusive recommendations due to their cohort size. There has been a significant shift in focus over the last decade to move away from using just the urinary copper excretion in isolation, and moving to pairing it with methods of measuring circulating bioavailable copper. In the wider setting, the UK/NIHR (National Institute for Health and Care Research) research delivery network (RDN) is a body that helps co-ordinate and support studies and is an important key factor in bringing together patients in less commonly seen conditions (Fig 1). Hopefully, the generation of this multidisciplinary guideline in Portugal will be the first step in its journey along this same route to bring the latest diagnostics and comprehensive evaluation and testing to bear to achieve best patient outcomes for their population of WD, and for the larger community caring for this disorder.
Publisher
S. Karger AG
Subject
