The ASH Research Collaborative Sickle Cell Disease Research Network: past, present, and future

Historically, sickle cell disease (SCD) has been overshadowed by progress in other hematologic disorders, but recent advances are reshaping its clinical and research landscape. Despite SCD reducing life expectancy by >20 years even with optimal care, transformative initiatives are fostering hope for improved outcomes. The American Society of Hematology (ASH) established the ASH Research Collaborative Sickle Cell Disease Research Network as a comprehensive program to revolutionize SCD research in the United States. This Network comprises a collection of innovative, research-focused cooperative sites and a robust Data Hub that aggregates extensive real-world data sets to enhance clinical insights and streamline research designs. Community advisory boards at both local and national levels ensure that the perspectives of individuals living with SCD guide research priorities. This report includes an overview of the initial demographics, such as the number of records, encounters, laboratory data, prescriptions, years of follow-up, and comorbidities per patient, within the context of the ASH Research Collaborative Sickle Cell Disease Research Network. These coordinated efforts are poised to significantly transform the landscape of SCD care, and this report details the initiative's mission, history, achievements to date, and its promising trajectory toward improving the lives of individuals affected by this chronic condition.