Hairy Cell Leukemia Patient Data Registry
This study is building a secure database of information from people living with hairy cell leukaemia (HCL). HCL is a rare type of blood cancer, and this registry will help doctors and researchers learn more about it. By collecting details from many patients, researchers hope to spot new patterns in how the disease behaves, find out which treatments work best, and discover any previously unknown problems. This information will also help design new clinical trials for HCL and ultimately improve the quality of life for patients and potentially reduce harm or death from the disease. The project is led by the Hairy Cell Leukemia Foundation with partner hospitals.
At a glance
What is this study about?
This study is all about helping people who have hairy cell leukaemia, a rare type of blood cancer. Because it's quite uncommon, doctors and researchers don't always have a lot of information to look at across many patients. This study aims to change that by creating a special, secure database.
Imagine this database as a very organised, confidential collection of important details about people with hairy cell leukaemia. When you take part, information like your symptoms, how your illness progresses, any problems you might have from the disease or its treatments, and how well you respond to different medicines will be added. This information will be put together from various hospitals, but importantly, all your personal details that could identify you will be removed first, so it's completely anonymous.
The main goal is to give researchers a clearer, bigger picture of hairy cell leukaemia. With this information, they can start to find out what treatments are most effective, discover new ways the disease might affect people, and even develop new medicines. Ultimately, this means better care and a better quality of life for people living with hairy cell leukaemia.
Key takeaways
- This study creates a secure, anonymous database for hairy cell leukaemia patients.
- It helps researchers understand the disease better and find improved treatments.
- Your identity will be protected; no personal details will be shared.
- Participation involves sharing existing medical information, not new tests.
- The study aims to improve care and quality of life for HCL patients.
- You can withdraw your data from the registry at any time.
Who may be eligible?
To be able to take part in this registry, you need to have been diagnosed with hairy cell leukaemia. This includes both the typical form of the disease, known as 'classic hairy cell leukaemia', and a less common type, called 'variant hairy cell leukaemia'.
There isn't an upper age limit for joining, so adults of any age can be considered. The study is open to both men and women.
However, children cannot take part in this study. This is because hairy cell leukaemia is not typically found in children, and the study is focused on adults.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- I have been diagnosed with classic hairy cell leukaemia.
- I have been diagnosed with variant hairy cell leukaemia.
- I am 18 years old or older.
- I understand children cannot participate.
What does participation involve?
If you decide to take part in this study, you won't need to do anything extra beyond your usual medical care. Participation simply involves allowing information that has already been collected during your routine hospital visits to be added to the secure database. You won't have any additional appointments, tests, or medication to take as part of this study. Your medical team at your hospital will make sure that any information shared is anonymous, meaning your name or anything that could identify you will be removed before it's added to the central registry. The registry will continue to collect information over time as part of ongoing research.
Potential risks and benefits
Locations (6)
- University of Miami/Soffer Clinical Research CenterVerified postcodeMiami, United States· Recruiting
- Mayo ClinicVerified postcodeRochester, United States· Recruiting
- University of Rochester /Wilmot Cancer InstituteVerified postcodeRochester, United States· Recruiting
- Ohio State University Comprehensive Cancer CenterVerified postcodeColumbus, United States· Recruiting
- Peter MacCallum Cancer CenterVerified postcodeMelbourne, Australia· Recruiting
- Cancer Care ManitobaVerified postcodeWinnipeg, Canada· Recruiting
Common questions
What is a 'registry'?
A registry is like a secure, organised database that collects information from many patients with the same health condition. It helps doctors and researchers learn more about the illness.
Will my personal details be shared?
No. All information shared from your hospital to the central registry will have your name and anything that could identify you completely removed first. It will be anonymous.
Do I have to do anything extra if I join?
No, you don't need to do anything. Your participation means your existing medical information, made anonymous, will be used for research.
What is hairy cell leukaemia?
Hairy cell leukaemia is a rare and usually slow-growing cancer of the blood and bone marrow. It affects a type of white blood cell called B lymphocytes.
Can I change my mind after joining?
Yes, absolutely. You can withdraw your permission for your data to be in the registry at any time. Your hospital will be able to remove your records quickly.
How to find out more
Hairy Cell Leukemia Research Data Registry
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
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