Hairy Cell Leukemia Foundation
Building Leadership
Hairy cell leukemia is a chronic and rare form of adult leukemia. It is estimated that approximately 2% of adult patients with leukemia have this form of disease. While the cause of this malignancy is not known, the origin of the malignant cell is thought to develop from the memory B cell compartment. These malignant cells infiltrate the bone marrow, the spleen, and the liver from the time of diagnosis. While lymph nodes in the abdomen may be involved, lymph nodes are rarely enlarged on physical examination. Hairy cell leukemia is treatable, but not curable. While the cause is not known, the treatment is usually very effective in helping patients lead a normal life.
Last updated 04/30/2025
Clinical
Disease Class
Hematological diseases
Body Systems
Hematopoietic / Lymphatic / Immune
Organs
Blood
Bone marrow
Bones
Spleen
Known Genetic Link
Yes, genetic factors contribute to the risk or severity of the condition
causative_genes
BRAF
contributory_genes
BRAF
Type of Inheritance
Not specified / unknown
Newborn Screening
Not applicable
Disease Mechanism(s)
Abnormal cell proliferation
Age of Onset
Adulthood (age 18-64)
Elderly (age 65+)
Average Age at Diagnosis
Adulthood (age 18-64)
Life Expectancy
Adulthood (age 18-64)
Elderly (age 65+)
Affected Sex(es)
Female
Male
National Prevalence
Unknown
Global Prevalence
Unknown
National Incidence
101-1000
Global Incidence
101-1000
Populations and/or ancestry with higher prevalence
The incidence of HCL is approximately three times higher in White than in Black populations.
Symptoms / Phenotypes
anemia
bruising susceptibility
fatigue
hemorrhage/bleeding
night sweats
pancytopenia
splenomegaly
Biomarkers
Diagnostic
· CD11c, CD103, CD123, and CD25, and BRAFV600E somatic mutation
Monitoring
· BRAF V600E mutation
Prognostic
· CD38, TP53 mutation, IGHV mutation
Therapeutic
· BRAF V600E mutation, CD20
Existing Therapies
FDA-Approved to Cure or Modify the Disease
· Cladribine, pentostatin, moxetumomab pasudotox-tdfk (Lumoxiti)
Off-Label Drug Use
Organizational & Research
Cell Lines
Cancer/tumor cells
Cell Lines, Institution
Not specified
Cell Lines, share
Unknown
Disease Model
Mouse
Disease Model, Involvement
Funded
Disease Model, share
Unsure
Clinical Trial Role
Data sharing
Focus group
Funding
Meeting with regulators
Recruitment and outreach, patients
Recruitment and outreach, trial sites/physicians
Results dissemination, publication
Study material design, review (not protocol)
Study protocol design, review
Biobank, Institution
None
Center of Excellence, Institution
Autonomous University of Barcelona
Bnai-Zion Medical Center
CHU Caen
CREO - Research Centre of Haematology and Oncology
CancerCare Manitoba
Charite-Universitatsmedizin
Lund University
Mayo Clinic
Medical University of Lodz
NIH
Peter MacCallum Cancer Centre
Scripps Clinic
Semmelweis University Medical School
The Ohio State University (OSU)
The Royal Marsden Hospital NHS Foundation Trust
The University of Texas MD Anderson Cancer Center
University of Alberta
University of Barcelona
University of Bologna
University of New Mexico
University of Rochester
University of Siena
University of Southampton
Zucker School of Medicine at Hofstra University/Northwell Health
Center of Excellence, Involvement
Consulted
Designed
Endorsed/Certified/Accredited
Funded
Registry
Yes, we have a registry that we created
Data Collected, Registry
Clinical data
Electronic health records/electronic medical records
Medication usage
Patient contact info
Data Entered by, Registry
Clinicians
Platform, Registry
REDCap
Natural History Study
No, we do not have a natural history study and have no plans to create or collaborate on one
FDA Patient Listening Session
No
FDA Patient-Focused Drug Development (PFDD) Program
No
ICD Codes
Yes, we have an ICD-10 code specific to our exact disease
Diagnostic Guidelines
Yes, we have guidance available on our website
Yes, we have published formal guidelines in a peer-reviewed journal
Science Advisory Board Policies
Yes, not willing to share SAB policies
Research Network Policies
Has CRN but no policies
Research Roadmap
Yes we have a Research Roadmap, and will share policies
International Chapters
None
International Partners
Europe
North America
South America