Data for the Common Good (D4CG) is excited to announce a new initiative in partnership with our University of Chicago colleague Dr. Michael Drazer: the Orphan Blood Cancers Data Commons, a component of the recently launched Miller Family Center for Rare Blood Cancers at UChicago Medicine.

The Miller Family Center is a first-of-its-kind center bringing together multidisciplinary expertise to accelerate discovery and improve outcomes for patients with rare hematologic malignancies. Dr. Drazer serves as the Center’s director, and D4CG’s contribution to building a robust data commons is central to its mission. The Center was made possible by a gift from Mark and Maureen Miller, a family with a personal connection to rare blood cancer, who saw in this kind of data-sharing infrastructure the potential to accelerate collective learning and generate breakthrough research.

“Orphan” blood cancers, a term referring to rare hematologic diseases such as certain forms of leukemia, lymphoma, and other blood disorders that affect small patient populations, are particularly difficult to study. The rarity of these diseases means that patients with orphan blood cancers often go underrepresented in clinical trials and large datasets, limiting researchers’ ability to understand disease biology, study patient outcomes, and develop evidence-based approaches to care. Combining data from many institutions in a data commons is one of the most effective ways to close that gap. Building data commons for rare diseases is central to D4CG’s mission, and our established infrastructure for pooling and harmonizing data across academic medical centers and research partners makes our team uniquely positioned to lead this effort.

The new commons will be built within D4CG’s Pediatric Cancer Data Commons (PCDC), a platform that already connects hundreds of international collaborators across fifteen disease-specific consortia. The PCDC’s approach is community-driven: participating institutions become members of a disease-specific consortium, retaining ownership and control over their data. Governance is shaped by the communities involved, and data are harmonized across sites to enable meaningful research that would not be possible without large combined datasets. Scientific priorities and research questions are defined by the clinicians, researchers, and patient-centered organizations who participate.

In a natural extension of the work the PCDC has done for numerous pediatric, adolescent, young adult, and adult cancers, the Orphan Blood Cancers Data Commons will bring this same model to rare blood cancers. We are now convening an initial group of stakeholders to shape the scope, governance, and scientific priorities of the commons. With the D4CG team, this consortium of stakeholders and data contributors will create a resource for orphan blood cancers that supports the study of cancer biology, outcomes, disparities, and treatment—work that will directly inform both clinical care and patient advocacy and ensure that every blood cancer patient, no matter how rare their diagnosis, can benefit from the power of data-driven science.