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PLEASE NOTE: The public review period has ended as of February 15, 2021. Version 0.0 of the Standard Forms and CDEs will remain available for download below until Version 1.0 is posted in April 2021.
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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.

Please download and review all of the following materials that are part of the public review package:

• Overview and Instructions
• Materials prepared by the working groups, which include case report forms (CRFs), summaries of work, and instrument recommendations,
  • Physical Examination/Medical History working group materials
  • Cardiopulmonary, Renal, and Cerebrovascular working group materials
  • Genetics/Assays working group materials
  • Outcomes working group materials
  • Monitoring Side Effects working group materials
  • Demographics/Socioeconomic CRFs
• Roster of contributors
• Comments spreadsheet

Comments can be added to the comments spreadsheet, and sent to curescinfo@emmes.com. Comments are due January 31, 2021. Feel free to share this with any community members and colleagues – we welcome all input.

After this comment period, the CureSCi Standard Form/CDE working groups will review and revise the recommendations. Version 1.0 of the CureSCi recommendations will be posted in Spring 2021.

Download and review the following Questions and Answers document for more information.

To learn more about the CureSCi CDE project, go to https://curesickle.org/datatools-overview.