Article

How to design a registry for undiagnosed patients in the framework of rare disease diagnosis – suggestions on software, data set and coding system

2021-02-11

Abstract excerpt

<title>Abstract</title> <p><bold>Background:</bold> About 30 million people in the EU and USA, respectively, suffer from a rare disease. Driven by European legislative requirements, national strategies for the improvement of care in rare diseases are being developed. To improve timely and correct diagnosis for patients with rare diseases, the development of a registry for undiagnosed patients was recommended by t...

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Literature Corpus work: 198a0500-c4ba-51bd-bf86-1ad79e946f3b
DOI: 10.21203/rs.3.rs-122656/v2

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