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[HTML][HTML] Scoping review of the recommendations and guidance for improving the quality of rare disease registries

JE Tarride, A Okoh, K Aryal, C Prada… - Orphanet Journal of …, 2024 - Springer
Abstract Background Rare disease registries (RDRs) are valuable tools for improving
clinical care and advancing research. However, they often vary qualitatively, structurally, and …
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Scoping review of the recommendations and guidance for improving the quality of rare disease registries.

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Abstract Background: Rare disease registries (RDRs) are valuable tools for improving
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[HTML][HTML] Scoping review of the recommendations and guidance for improving the quality of rare disease registries

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[PDF][PDF] Scoping review of the recommendations and guidance for improving the quality of rare disease registries

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