The IWMF’s Collaboration with LLS For The National Patient Registry Project
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The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) is pleased to announce its collaboration with The Leukemia & Lymphoma Society (LLS) on the LLS National Patient Registry project (LLS-NPR). We are excited to have this unique opportunity to be at the forefront among lymphoma disease organizations in the United States.
This innovative effort will connect Waldenstrom’s macroglobulinemia (WM) researchers with provider-sourced medical record data for participating patients throughout the United States, enabling them to uncover patterns in care, side effects and outcomes of WM cancer patients, which can lead to better treatments and help improve the lives of WM patients.
The IWMF is excited to be among the first two lymphomas that have been invited to participate in this important effort. Over time, the LLS National Patient Registry is expected to contain patient data for all blood cancers.
Why Is the IWMF Participating?
Since WM is so rare, it’s difficult to obtain information from a sufficient number of patients that can be analyzed to help arrive at answers to many of the major questions and issues that surround being diagnosed with and managing WM.
The LLS National Patient Registry can help in that regard, and will gather epidemiological population-based disease knowledge that will allow researchers to conduct translational research projects – and that’s why the IWMF has decided to be an early participant in the project.
It is our hope that with the participation of many WM patients, a large body of WM patient data will be collected in one place, i.e. the LLS National Patient Registry (rather than remain locked up separately in individual institutions scattered around the country). This one large source of data can then be used by researchers world-wide to better understand our disease and develop treatments leading to a cure. And, once our WM-specific data is merged with data from other blood cancer patients, perhaps even more cross-blood cancer type patterns may emerge, benefitting everyone affected by leukemia or lymphoma.
What is the Benefit of Participating?
The initial focus is to enable researchers to answer questions related to current diagnosis and treatment including, but not limited to:
- What % of diagnosed patients are “wait & watch”
- What is the most common first line treatment
- What % of relapsed patients are now treated with Ibrutinib
- When Ibrutinib is used, what is the dose prescribed
- Is testing for Myd88 and CXCR4 routinely done
The ability for researchers to pose and answer questions such as these will be invaluable as they search for better treatments with deeper remissions, fewer side effects, and ultimately a cure for WM, and other blood cancers.
The success, viability, and eventual benefit to patients of this project is dependent on all of us sharing our medical data via our medical providers’ electronic medical record systems.
These systems often give you access to what is commonly referred as a “patient portal.” This means that your provider supplies you with a web site for their practice that allows you to have a user ID and password so that you can login to this portal and review certain aspects of your care such as lab test results, a current medication list, visit summaries and so on. If you do not have access to a portal, then you will not be able to participate in this project. If you are not aware of whether your providers support these portals please ask them.
Not sure whether to participate yet? Watch a 2-minute video that explains the project further:
How Can You Participate?
To join the project, you will need to create a user account with the LLS Community. The registration is simple and once an account is confirmed you will be able to easily walk through the process to share your records within a matter of minutes. (You will NOT have to enter the data values yourself!)
You may refer to the following PDFs:
You can help make your own future brighter and also make a difference in the lives of all of us – and it just can’t be done without you.
Thank you for your support, time, and consideration.