Hairy Cell Leukemia Patient Data Registry
Hairy Cell Leukemia Patient Data Registry
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
 600 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.
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 the symptoms and the clinical course of the
 disease, to the complications from the disease and its treatment, presence of minimal
 residual disease, frequency of relapse and subsequent management, data on novel molecular
 markers associated with the prognosis.

 In conjunction with the Department of Bioinformatics at The Ohio State University, the
 investigators have created a system for safeguarding the confidentiality and the identity of
 all patients who agree to participate in this research registry. Each participating
 institution will be responsible for de-identification of the data, using software developed
 by The Ohio State University, Department of Biomedical Informatics, before it is used in the
 registry. Each institution will confidentially maintain a code for linking this information
 to an individual patient.

 Each participating institution will have direct control over the data contained in the
 registry that is associated with their respective patient population. As a result of these
 measures, should a patient wish to withdraw from the registry, the responsible institution
 will be able to immediately remove all records related to that patient from the registry.
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.