The CLL Society’s Collaboration With LLS For The National Patient Registry Project

CLL/SLL Patients in the US can advance Research NOW with Just a few Clicks!

The CLL Society 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 blood cancer disease organizations in the United States.

This innovative effort will connect CLL 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 CL/SLL patients, which can lead to better treatments and help improve the lives of CLL patients.

The CLL Society is proud to be among the first two nonprofits representing lymphoma and leukemia patients 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 CLL SOCIETY PARTICIPATING?

Since CLL/SLL is relatively 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 CLL.

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 CLL Society has decided to be an early participant in the project.

It is our hope that with the participation of many CLL patients, a large body of CLL 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 CLL-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:

–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?

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 CLL, 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?  Click the link below to watch a 2-minute video that explains the project further:

https://youtu.be/Lq4qDGP7s3s

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 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.