We are pleased to announce that the Hairy Cell Leukemia Patient Data Registry is now open on a limited basis.
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 hairy cell leukemia. As part of the Foundation’s commitment to advancing research, we developed a comprehensive Patient Data Registry. This Registry will 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. By aggregating the clinical data of a small and geographically diverse patient population, we can provide a powerful tool for medical professionals to share, learn and ultimately make better decisions about the care of patients with hairy cell leukemia.
The Patient Data Registry is a complex and time-intensive endeavor. We anticipate that it will take 2-3 years to fully integrate all of our Centers of Excellence. The Ohio State University Wexner Medical Center and The Royal Marsden are the initial participating sites of the Patient Data Registry. The remaining Centers of Excellence will follow over time. Each Center of Excellence is responsible for consenting its own patients. For those being treated at one of our Centers of Excellence, that Center will contact you directly with an opportunity to participate when the Patient Data Registry is implemented at their site.
If you are interested in participating in the Patient Data Registry and you are NOT being treated at one of our Centers of Excellence, please complete the form below. A member of the data registry team at The Ohio State University will contact you to answer any questions and to further explain the process.
Our goal is to eventually have all hairy cell leukemia patients participate in the Patient Data Registry. We hope you will consider participating in this promising opportunity.