NCT02560883|Recruiting
Hairy Cell Leukemia Patient Data Registry
HCL-PDR
Clinical Research in Hairy Cell Leukemia: Surveillance and Documentation of Clinical Outcomes in a Rare Form of Adult Leukemia
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HCL-PDR
Clinical Research in Hairy Cell Leukemia: Surveillance and Documentation of Clinical Outcomes in a Rare Form of Adult Leukemia
Sponsor study identifier
observational
5,000
3 countries
8
Study Start
January 2, 2013
Actual (reported)Primary Completion
December 31, 2030
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Study Completion
December 31, 2030
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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.
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
December 31, 2030
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
January 2, 2013
Actual (reported)August 20, 2015
Actual (reported)September 25, 2015
Actual (reported)December 31, 2030
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
December 31, 2030
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Surveillance
Establish a database of Hairy Cell Leukemia patients diagnosed or living in US to track Hairy Cell Leukemia disease course, patient reported outcomes, morbidity, and patient survival.
up to 25 years
Research
up to 25 years
Contact
up to 25 years
This study will be a multi-institutional, international project that will collate clinical information from patients with Hairy Cell Leukemia from participating institutions in the Hairy Cell Leukemia Foundation. Patients within the United States with HCL, who live in remote areas, without access to a HCLFCenter of Excellence, may voluntarily submit their name and contact information, through the Hairy Cell Leukemia Foundation website.
University of Miami/Soffer Clinical Research Center
Miami, Florida, 33136, United States
Mount Sinai Medical Center of Florida
Miami Beach, Florida, 33140, United States
Michael Grever, MD
The Ohio State University Comprehensive Cancer Center
First Submitted
August 20, 2015
First Posted
September 25, 2015
Study Start
January 2, 2013
Actual (reported)Primary Completion
December 31, 2030
EstimatedContact the study team to confirm eligibility.
Mayo Clinic
Rochester, Minnesota, 55905, United States
University of Rochester /Wilmot Cancer Institute
Rochester, New York, 14642, United States
Ohio State University Comprehensive Cancer Center
Columbus, Ohio, 43210, United States
Peter MacCallum Cancer Center
Melbourne, Victoria, VIC 3000, Australia
BC Cancer, Part of the Provincial Health Services Authority
Vancouver, Britsh Columbia, V5Z 4E6, Canada
Cancer Care Manitoba
Winnipeg, Manitoba, R3E 0V9, Canada
Planned date reported by the registry; this milestone is not confirmed as achieved.
Study Completion
December 31, 2030
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Last Updated
July 2, 2026
Record last verified: 2026-06
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Source: ClinicalTrials.gov.
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