Data Elements Paper

Sickle Cell Disease (SCD) is a growing global health concern, highlighting an urgent need for data-sharing and collaborative international research. However, SCD research is largely conducted in silos, compromising the depth required for effective data-driven public health decisions. SickleInAfrica is addressing these needs by developing ontology-driven (SCDO) standardized data elements, standard operating procedures (SOPs) and processes for improved data quality and tools for data sharing and harmonization of existing and prospective data. These resources are developed collaboratively by an international group of SCD stakeholders.