Hairy Cell Leukemia Patient Data Registry
WHY IS THE HCL PATIENT DATA REGISTRY IMPORTANT?
Hairy Cell Leukemia (HCL) is a rare disease and patients receive care from different doctors around the world. This makes it challenging for researchers to identify patterns, study unanswered questions, and develop more effective treatments. By participating in the HCL Patient Data Registry, you can help bridge these gaps and contribute to important discoveries that may improve care for all patients.
HOW WILL THE REGISTRY MAKE A DIFFERENCE?
Your participation in the registry allows researchers to:
Identify trends in patient outcomes to enhance treatment strategies.
Discover previously unknown complications of HCL.
Design clinical trials that can lead to better therapies.
Improve healthcare approaches by understanding real-world patient experiences.
Every piece of information collected for the registry strengthens research to improve diagnosis, treatment, and quality of life for people with HCL and the HCL variants.
HOW CAN YOU GET INVOLVED?
For Patients in the United States, including U.S. Territories
If you live in the United States and receive your care in the United States, we encourage you to join the HCL Patient Data Registry. The more people who join, the more meaningful and impactful the research will be.
JOINING IS SIMPLE AND SECURE.
1.)Complete the form below.
2.)A member of the HCL Patient Data Registry team at The Ohio State University will contact you to answer your questions and guide you through the enrollment process.
The Registry team at OSU is required to share detailed study information so that you can voluntarily decide to participate. Please expect a call from (614) 293-5000. The caller ID may appear as "The Ohio State University” or “OSU” or “OSU Wex Med Center”. The Registry team may leave a voice mail if you do not answer. The call will take about 10-15 minutes.
3.)If you do not receive a phone call from the Registry team at OSU within two weeks of completing the online form, you can contact the Registry team.
Registry team contact information:
Phone: (614) 685-0635 Email: HCLRegistry@osumc.edu
YOUR PRIVACY AND SECURITY MATTER.
We understand that sharing personal information can be a concern.
Please know that:
Your data is protected.
We follow strict security measures to keep your information confidential and assure ethical use of your data.
Your identity is secure. Data used for research is anonymized to protect your privacy and stored under strict measures.
Your participation is voluntary. You can choose to update or withdraw your information at any time.
The Hairy Cell Leukemia Hairy Cell Leukemia Patient Data Registry (HCL-PDR) is a clinical registry, ClinicalTrials.gov ID: NCT02560883.