Hairy cell leukemia (HCL) is a rare lymphoproliferative disorder, comprising only
2% of all leukemias. The Hairy Cell Leukemia Foundation (HCLF) has developed a patient
data registry to enable investigators to better study the clinical features, treatment
outcomes, and complications of patients with HCL. This system utilizes a centralized
registry architecture. Patients are enrolled at HCL Centers of Excellence (COE) or
via a web-based portal. All data are de-identified, which reduces regulatory burden
and increases opportunities for data access and re-use. To date, 579 patients have
been enrolled in the registry. Efforts are underway to engage additional COE's to
expand access to patients across the globe. This international PDR will enable researchers
to study outcomes in HCL in ways not previously possible due to the rarity of the
disease and will serve as a platform for future prospective research.
