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

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

Abstract 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...

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Bibliographic Details
Main Authors: Jeffrey A. Glassberg, Elizabeth A. Linton, Katrina Burson, Tabitha Hendershot, Joseph Telfair, Julie Kanter, Victor R. Gordeuk, Allison A. King, Cathy L. Melvin, Nirmish Shah, Jane S. Hankins, Axel Yannick Epié, Lynne D. Richardson, for the Sickle Cell Disease Implementation Consortium
Format: Article
Language:English
Published: BMC 2020-07-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Sickle cell disease
Standardized data collection tools
SCDIC registry forms
Accurate characterization
Online Access:http://link.springer.com/article/10.1186/s13023-020-01457-x

Internet

http://link.springer.com/article/10.1186/s13023-020-01457-x

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