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SHARE: towards usable, trustworthy and interoperable synthetic health data for rare diseases

bmjhci · 2026-01-21 · canonical JSON source

2 visible annotations · policy: published · automated confidence ≥ 75.00%

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The growing demand for accessible, high-quality and privacy-preserving health data has led to increased interest in synthetic health data as a promising solution to overcome data scarcity and legal barriers.1 Synthetic data refer to information that has been created artificially to mimic real-world observations. This is particularly relevant in the context of rare diseases, where real-world data are often fragmented, siloed or insufficient for robust artificial intelligence (AI) development and clinical research.2 This paper summarises the outcomes of a multidisciplinary Sandpit workshop involving experts with lived experiences in rare diseases, as well as experts in clinical medicine, data science, cybersecurity and medical informatics. The goal was to define a shared vision and roadmap for a synthetic health data repository (SHARE).