The REALYSA study aims to improve knowledge about lymphomas and the lives of patients with lymphomas. Thanks to the large number of patients who participate, it allows sub-studies to be conducted simultaneously on specific research questions. One of its sub-studies, called FL REALYSA, focuses on patients with follicular lymphoma.
Why is this study being implemented?
Follicular lymphoma is the most common indolent (slow-growing) non-Hodgkin lymphoma. Significant advances have been made in recent decades, such as the widespread use of rituximab immunotherapy during treatment. Thanks to these advances, about 80% of patients are still alive 10 years after diagnosis. Nevertheless, follicular lymphoma remains a very heterogeneous disease, with about 20% of patients having a less favorable disease course, highlighting an unmet medical need.
Many treatment strategies are possible depending on the characteristics of each patient and their lymphoma, such as active surveillance, immunotherapy alone or immunochemotherapy. The available data are mainly from clinical trials and there is little data on the real-life management of patients.
What are the objectives of the study?
The study aims to describe patients with follicular lymphoma. Demographic data, as well as their state of health and the evolution of it, will be analyzed.
The study also aims to describe what treatments these patients received and how effectively.
This so-called “real-life” data (as opposed to clinical trials) will be useful to better understand how patients are managed and what improvements should be considered, especially in clinical trials.
How will the study be carried out?
The study will be based on the analysis of data from the medical records of patients participating in REALYSA. These analyses will be carried out by LYSA members.
This study is carried out in collaboration with Dr. Clémentine Sarkozy (Institut Curie, Paris).
No link can be made between the data contained in the reports and the patients participating in REALYSA.
The study will begin in September 2025.
TO THE ATTENTION OF PATIENTS PARTICIPATING IN REALYSA
What does this project implies for you?
This study only concerns patients participating in REALYSA who have Follicular Lymphoma.
If you are in this situation and you agree to your data being used for this study, this has no direct implication for you.
In particular, you will not have to answer any additional questionnaire compared to what is already planned as part of your participation in REALYSA.
What should you do about this study?
There are two options:
- You are not opposed to the use of your data in the context of this study:
- In this case, you don’t have to do anything.
- You wish to object to the use of your data in the context of this study:
- In this case, you must inform the doctor who offered you to participate in the REALYSA study. You can also notify your decision by writing an email to the following address: dpo@lysarc.org .
You will find detailed information on your rights to object to the use of your data on page 12 of the information notice that was given to you when you agreed to participate in REALYSA.