The Data Hub

A Source for Real-World Hematology Data

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Accelerated Research and Improved Patient Outcomes, Driven by Data

The Data Hub is helping accelerate progress beyond what has ever been possible for people with blood diseases. These data can have broad use, such as informing research studies, supporting new drug development, and enhancing quality improvement initiatives.

Become a Data Hub Site

The Data Hub is currently collecting data on sickle cell disease (SCD) and multiple myeloma, with plans to expand to additional hematologic conditions.

Sites that submit data to the Data Hub have access to reports and analysis of their own data, as well as de-identified, aggregate-level data from all participating sites. Learn about the Data Hub’s SCD and Multiple Myeloma Programs.

Sickle Cell Disease Multiple Myeloma
Data Quality

A Network to Improve the Quality of Sickle Cell Disease Care

Sites participating in the Data Hub’s SCD Program are also invited to take part in the SCD Learning Community, a learning network that uses insights gained from longitudinal data in the Data Hub to tackle challenges in clinical practice. Working together to improve as a community accelerates the pace of change for all those affected by SCD. Learn more about the SCD Learning Community.

Leveraging Real-World Evidence in Hematology

The ASH Research Collaborative® joined federal partners and other stakeholders to explore recommended methods for coordinating clinically relevant and reliable real-world data for genomic therapies for genetic blood disorders. Learn more about the Real-World Evidence Initiative.

ASH Global Initiatives

The Data Hub’s online data collection tools and export services support the following projects of the American Society of Hematology (ASH).

Latin American Registry on Aplastic Anemia

The Latin American Registry on Aplastic Anemia (LARAA) is a collaboration across 10 Latin American countries to capture aplastic anemia data. The initiative aims to create a “Proof of Concept” registry that will demonstrate collaboration across Latin America, establish common standards for data collection, and allow participants to retain ownership of their data. The first phase of the initiative is a three-year retrospective study that is providing baseline data on the distribution of aplastic anemia and its specific characteristics in the region. This will be followed by the implementation of a prospective protocol in the coming year.

Consortium on Newborn Screening in Africa (CONSA)

The Data Hub serves as the data capture resource for this consortium of seven African countries working together to improve newborn screening for SCD in sub-Saharan Africa. The goal is to improve long-term health outcomes for individuals with SCD in this region.

Learn more about the Consortium on Newborn Screening in Africa.

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