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Data Management

The Data Management Working Group aims to facilitate capturing and depositing of data from research participants into a centralized secure database. Data will be standardized and will be easy transform for analyses and for use in collaborative research. 


  • Working Group Meets Monthly
  • System Architecture is approved by SC
  • RedCap Is Functional at all SPARCO sites
  • SPARCO Research Data Elements 
  • SCD Standardized REDCap Data Elements are available publicly in REDCaP and SADaCC website
  • Tracking of Recruitment at sites
  • SOPs for data collection, management, security and sharing are approved by SC and accessible via the SADaCC website
  • Site Visits Are Conducted by SADaCC & SPARCO Hub
  • Data Quality and Assurance system is functional
  • Technical HelpDesk for the sites is functional
  • A centralized mySQL hemoglobinopathy database is live on the Sickle In Africa website

Progress to date:

  • Draft Standardized data dictionary
  • Comparison of existing data elements from SPARCO sites and PhenX
  • Draft System Architecture
  • REDCap database and data capturing

Chair: Prof. Raphael Sangeda

Members: Prof. Ambroise Wonkam, Dr. Victoria Nembaware, Prof. Nicola Mulder, Ms. Annemie Stewart, Mr. Wilson Mupfururirwa, Ms. Irene Kyomugisha, Mr. Mario Jonas, Dr. Jack Morrice, Prof. Julie Makani, Dr. Irene Minja, Prof. Raphael Sangeda, Upendo Masamu, Dr. David Nana Adjei, Mr. Isaac Nyanor, Prof. Obiageli Nnodu, Mr. Reuben Chianumba, Mr. Olumide Owolabi, Dr. Ibrahima Keita, Mr. Moussa Coulibaly, Mr. Daniel Kandonga, Mr. Michael Msangawale, Dr. Agnes Jonathan, Dr. Daudi Jjingo, Mile Nsubuga, Takudzwa Mtisi, Dr. Francis Simusika

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