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

Area of Science:

• Hematology
• Clinical Research
• Public Health

Background:

• Sickle Cell Disease (SCD) historically received less research attention than other blood disorders.
• SCD significantly reduces life expectancy, necessitating urgent advancements in care and research.
• The American Society of Hematology (ASH) initiated a network to address these challenges.

Purpose of the Study:

• To introduce the ASH Research Collaborative Sickle Cell Disease Research Network.
• To outline the network's structure, including cooperative sites and a Data Hub.
• To present initial demographic data and the network's mission for transforming SCD care.

Main Methods:

• Establishment of a national research network with cooperative sites.
• Development of a Data Hub for aggregating real-world SCD data.
• Inclusion of Community Advisory Boards to guide research priorities.

Main Results:

• The network includes multiple research sites and a central data repository.
• Initial demographic data on patient records, encounters, lab data, and comorbidities are presented.
• The network facilitates comprehensive data collection for enhanced clinical insights.

Conclusions:

• The ASH Research Collaborative Sickle Cell Disease Research Network represents a significant initiative to advance SCD research.
• This coordinated effort aims to improve clinical insights and streamline research for better patient outcomes.
• The network's structure and data-driven approach promise to transform the landscape of SCD care.