Coding undiagnosed rare disease patients in health information systems: recommendations from the RD-CODE project
Coding undiagnosed rare disease patients in health information systems: recommendations from the RD-CODE project (BMC).
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The recommendations can now be implemented in HIS (electronic health records and/or registries) and could be a game-changer for patients, clinicians and researchers in the field, enabling assessment of the RD population, including undiagnosed patients, adaptation of policy measures including financing for care and research programs, and to improved access of undiagnosed patients to research programs.
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Quelle: BMC, 27.01.2024