Clinical Research in Hairy Cell Leukemia: Surveillance and Documentation of Clinical Outcomes in a Rare Form of Adult Leukemia
Ohio State University Comprehensive Cancer Center
Summary
The overall objective is to develop a clinical data registry that can be used to facilitate research with the ultimate goal of reducing the morbidity and/or mortality and improving the quality of life of patients diagnosed or living with hairy cell leukemia. With approximately 1,000 new cases of this rare disease identified in the US each year, HCL represents 2% of all cases of leukemia in adults. Considering the rarity of this chronic leukemia, the Hairy Cell Leukemia Foundation (HCLF), in partnership with investigators from its Centers of Excellence, seeks to develop a registry to help researchers identify new trends in outcomes, recognize the most effective treatments, discover previously unknown complications of the disease, and design clinical trials for new therapies.
Description
This clinical registry is being established to collect de-identified information on this rare disease. The registry created by assimilation of de- identified coded patient data will centralize information that can be used to improve the management of the many complications of this disease and its treatment. This study is focused on collection of clinically and biologically meaningful endpoints across multiple institutions; as such, it is not focused on a specific set of hypotheses but will collect data that will facilitate such analyses. The investigators will collect information related to th…
Eligibility
- Age range
- 18+ years
- Sex
- All
- Healthy volunteers
- No
Inclusion: * Patients with classic hairy cell leukemia * Patients with the variant of hairy cell leukemia. Exclusion: * Children are excluded from the study, since Hairy Cell Leukemia wasn't described in children.
Locations (6)
- University of Miami/Soffer Clinical Research CenterMiami, Florida
- Mayo ClinicRochester, Minnesota
- University of Rochester /Wilmot Cancer InstituteRochester, New York
- Ohio State University Comprehensive Cancer CenterColumbus, Ohio
- Peter MacCallum Cancer CenterMelbourne, Victoria
- Cancer Care ManitobaWinnipeg, Manitoba