The REALYSA study and the DESCAR-T registry (dedicated to patients treated with CAR-T cells) aim to improve knowledge about lymphomas and the lives of patients with lymphomas. Thanks to the large number of patients who participate, these studies allow for simultaneous sub-studies on specific research questions. One of its sub-studies concerns patients with Grey Zone lymphoma.
Why is this study being implemented?
Grey zone lymphoma is a very rare and aggressive subtype of lymphoma, with features of both Hodgkin’s lymphoma and primary mediastinal B-cell lymphoma (which is itself a subtype of non-Hodgkin lymphoma).
Since 2022, advances in research have led to a better understanding and definition of this particular lymphoma.
But, because it is a rare disease, the information we have on the treatments currently offered is limited. The published data come mainly from old studies, carried out before the arrival of new drugs such as:
- drugs that stimulate the patient’s immune defenses so that they attack cancer cells more effectively
- antibodies associated with an anti-cancer drug, making it possible to directly target cancer cells
- CAR-T cells, which are T cells that are reprogrammed in the lab to recognize and destroy cancer cells
These more modern approaches could be beneficial for people with Grey zone lymphoma, but there is currently a lack of data to confirm this.
What are the objectives of the study?
The aim of this study is to improve knowledge of this rare lymphoma by observing the actual management of patients. In particular, it aims to:
- Describe people with Grey zone lymphoma and the treatments they are currently receiving, including CAR-T cells.
- To analyse the course of the disease and describe the effectiveness of modern treatments, and to compare them with data from older studies and data from related lymphomas, including primary B-cell mediastinal lymphomas
This so-called “real-life” data (as opposed to clinical trials) will be useful to better understand how patients are being cared for and what improvements should be considered. They will thus make it possible to improve future therapeutic protocols.
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 and DESCAR-T.
This study is carried out in collaboration with Prof. Clémentine Sarkozy (Institut Curie) and Dr. Pierre Sesquès (Hospices Civils de Lyon). Researchers involved in this study will have access to data on patients who participate in the REALYSA study or DESCAR-T. No link can be established between the data used and the patients participating in REALYSA or DESCAR-T.
The study will begin in March 2026.
TO THE ATTENTION OF PATIENTS PARTICIPATING IN REALYSA OR DESCAR-T
What does this study mean for you?
This study is only in patients participating in REALYSA or DESCAR-T who have Grey zone lymphoma or primary B-cell lymphoma of the mediastinum.
If you are in this situation and you agree to have your data used for this study, it has no direct implications 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 or DESCAR-T.
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 the study:
è In this case, you don’t have to do anything
- You wish to object to the use of your data in the context of the study:
è In this case, you must inform the doctor who suggested that you participate in the REALYSA study or DESCAR-T. You can also notify your decision by writing an email to the following address: dpo@lysarc.org.
You will find precise information on your rights to object to the use of your data in the information note that was given to you when you agreed to participate in REALYSA (p12) or DESCAR-T.