The LLS National Patient Registry
The LLS Patient Registry is an exciting, new research project sponsored by The Leukemia & Lymphoma Society® (LLS) to help improve quality of life and outcomes among blood cancer patients. This innovative project will connect LLS researchers with real-world medical data.
Why is this important?
Your medical records hold valuable information. When your records are shared as part of a registry, this allows researchers to compare data and uncover patterns of side effects and outcomes that could be important for others to know. Over time, understanding of these patterns can lead to better treatment practices for patients with a diagnosis similar to your.
Who has joined the registry?
Currently, the registry has been available to patients with Waldenström macroglobulinemia and chronic lymphocytic leukemia (CLL)/small cell lymphocytic lymphoma (SLL). We were initially looking to answer the following questions:
- What percent of diagnosed patients are “wait & watch”?
- What is the most common first line treatment?
- What percent of relapsed patients are now treated with Ibrutinib?
- When Ibrutinib is used, what is the dose most often prescribed?
- Is testing for Myd88 and CXCR4 routinely done?
Chronic lymphocytic leukemia (CLL)/small cell lymphocytic lymphoma (SLL):
- Have cytogenetic analysis been done upon diagnosis or prior to treatment?
- What is the use of Ibrutinib based on cytogenetic analysis?
- What types of BTK inhibitors are being used in real world treatment?
- What is the frequency of initial treatment with chemo (FCR/BR) vs. targeted oral therapy (Ibrutinib) in current practice?
For additional information, click the link below to watch a 2-minute video that explains the project further:
Thank you for your support, time, and consideration.