Hairy Cell Leukemia Patient Data Registry
Why is a Registry Important for Hairy Cell Leukemia (HCL)?
Hairy cell leukemia is a rare disease. Patients with HCL are diagnosed and treated by many different doctors around the world. This makes it difficult for researchers to identify common factors that may help them better understand hairy cell leukemia.
We have invested in the development of a comprehensive HCL Patient Data Registry to provide researchers the resources to better understand the complications, treatment outcomes, disease subtypes, comorbidities and epidemiology in patients with HCL.
How will the Registry Make a Difference?
Our Registry is a critically important tool that will enable researchers to study hairy cell leukemia in ways not previously possible given the rarity of the disease. Through the Registry, we will cooperate and collaborate with patients, doctors, and institutions around the world to collect HCL patient data. The Registry will help researchers identify new trends in patient outcomes, discover previously unknown complications of the disease and design clinical trials for new therapies.
How Can You Get Involved?
More than 400 patients have already chosen to participate in the Registry by sharing their journey with HCL. We are very grateful for their collaboration.
To maximize the impact of the Registry, we need as many patients as possible to participate.
We encourage you to complete the form below to participate in the Registry. A member of the Patient Data Registry team at The Ohio State University will contact you to answer any questions you may have and explain the enrollment process.
We maintain confidentiality and keep your information secure.