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Publication of data collection forms from NHLBI funded sickle cell disease implementation consortium (SCDIC) registry

7 Jul 2020

Abstract excerpt

BACKGROUND: Sickle cell disease (SCD) is an autosomal recessive blood disorder affecting approximately 100,000 Americans and 3.1 million people globally. The scarcity of relevant knowledge and experience with rare diseases creates a unique need for cooperation and infrastructure to overcome challenges in translating basic research advances into clinical advances. Despite registry initiatives in SCD, the...

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PMID: 32635939
DOI: 10.1186/s13023-020-01457-x

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