The ASH Research Collaborative’s (ASH RC) Real-World Evidence Consortium for Sickle Cell Disease (SCD) has selected the Duke Clinical Research Institute (DCRI) to serve as the technical lead for the Consortium’s analytic activities.

“We are delighted to work with DCRI on this project,” said Mark A. Crowther, MD, MSc, FRCPC, FRSC, chair of the ASH RC Board of Directors and chair of the department of medicine at McMaster University. “DCRI has a long-standing reputation as the premier institution for conducting innovative, multi-center clinical research that directly impacts the lives of patients around the world, and I am confident that our collaboration will lead to significant progress in improving our understanding of SCD and providing better care to those affected.”

The consortium, which launched in 2024 in collaboration with the Reagan-Udall Foundation for the Food and Drug Administration, aims to develop consensus recommendations on clinical outcomes important in the treatment of SCD. It will define the codes that indicate the clinical characteristics of SCD and apply those standards to real-world data sets, including the ASH RC’s Data Hub, which contains data from over 25,000 individuals living with SCD.

SCD is the most common inherited blood disorder, affecting around 100,000 Americans and one out of every 365 Black or African American births. Individuals with SCD have abnormally shaped blood cells, which can become lodged in blood vessels, leading to complications such as episodes of severe pain, as well as damage to tissues and organs.

The ASH RC’s Real-World Evidence Consortium represents the intersection of clinical research, clinical care, regulatory affairs, and industry partnerships, uniquely positioning these organizations to drive change. It is made possible in part by support from Novo Nordisk and Sanofi.