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The Cure Sickle Cell Initiative (CureSCi) Standard Forms/Common Data Elements (CDEs) working groups have released draft standard forms and CDEs (Pre-Release of Version 1.0) for public review. The working groups are in the process of finalizing these documents and strongly encourage input during this public review period.
The goals are to support the National Institutes of Health (NIH) data-sharing roadmap and to address challenges of varied data collection standards and difficulties in comparing data between studies. CDEs are recommended by the NIH Strategic Plan for Data Science to improve data quality, facilitate collection of data, data-sharing and comparison and reduce study start-up time and overall study cost.
videos & visualsDante’s Journey: Living With Sickle Cellhttps://www.youtube.com/watch?v=c3LGJRNW...
people & placesJames F. Casella, MDDr. James Casella is a professor of pedi...
news & eventsRare Diseases and Orphan Products Breakthrough SummitEach year, the NORD Summit, one of the l...
people & placesAlan W. FlakeDr. Flake is an attending surgeon in the...
people & placesSickle Cell Disease Program at Arkansas Children’sArkansas Children's is the only hospital...
education & researchHealth-related quality of life at 1 Year in the drepagreffe trial comparing chronic transfusion to transplantation i...Health is not just defined as the absenc...
education & researchPiracetam for reducing the incidence of painful sickle cell disease crisesBACKGROUND: Sickle cell disease is one ...
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This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.