Hairy Cell Leukemia (HCL) Patient Data Registry

Why is a Registry Important for Hairy Cell Leukemia?

Hairy cell leukemia is a rare disease. Patients with the disease 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 HCL and find a cure.

Many important questions still remain unanswered in hairy cell leukemia. More research is needed to elucidate outcomes in specific disease subtypes, complications of the diseases and their therapies, and other issues pertinent to patients such as quality of life.

How will the Registry Make a Difference?

We have invested in the development of a comprehensive hairy cell leukemia Patient Data Registry to provide researchers the resources to better understand the complications, treatment outcomes, disease subtypes, comorbidities and epidemiology in patients with HCL.

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 until a cure is discovered.

How Can You Get involved?

We encourage your institution to participate in the Hairy Cell Leukemia Patient Data Registry to enrich our collective data and facilitate collaborative research and investigation in HCL. For information on how to involve your institution, please contact Anna Lambertson by email at info@hairycellleukemia.org or by phone at +1 224.355.7201.