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Patient-reported diagnostic pathways and disclosure experiences in autosomal dominant polycystic kidney disease (ADPKD)
2026-02-07
nephrology
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Background and objectivesDiagnostic disclosure practices for autosomal dominant polycystic kidney disease (ADPKD) vary and may influence patient experience and linkage to nephrology care. We characterized patient-reported diagnostic pathways, perceived timing, and disclosure experiences in the PK-DIAG survey. Design, setting, participants, and measurementsCross-sectional web-based survey in France (February 2019-August 2024) among adults with self-reported ADPKD, disseminated via patient organi...
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