The DESCAR-T registry was set up at the request of the health authorities to improve knowledge of CAR-T cell therapies available in France to treat patients with hematologic malignancies. The objective of this registry is to collect data on the efficacy as well as on short- and long-term tolerance of these therapies in real-life setting.
Thanks to the data collected, the registry makes it possible to carry out projects to answer specific research questions. One of these projects is looking at the outcome of patients treated with CAR-T for their T cell/histiocyte-rich large B-cell lymphoma (THRLBCL).
Why is this study being implemented?
T cell/histiocyte-rich large B-cell lymphoma is a rare subtype of diffuse large B-cell lymphoma. Outcomes of CAR-T cells in this population are still poorly known to date. Thanks to the data collected in the DESCAR-T registry, it will be possible to describe more precisely the response to the disease with CAR-T in this very specific pathology.
What are the objectives of the study?
The study aims first to describe the effectiveness of CAR-T cells in real life in patients with THRLBCL. Its second objective is to describe the adverse effects of this therapy in these patients.
How will the study be carried out?
The study will be based on the analysis of data from the DESCAR-T registry. The analyses will be carried out by LYSARC.
The report of this study will be sent to the project leaders, Dr. Axel André and Prof. François Lemonnier, hematologists at the Henri Mondor Hospital, who will only receive a report of aggregated results without individual data. No link can be established between the information contained in the report and the patients whose data is collected in DESCAR-T.
This study will be carried out in 2024 and the results will be communicated at an International Congress of Hematology as soon as possible.
FOR PATIENTS WHO HAVE RECEIVED CAR-T THERAPY IN FRANCE
What does this project mean for you?
This project concerns patients included in the DESCAR-T registry, diagnosed with T cell/histiocyte-rich large B-cell lymphoma, for whom CAR-T treatment (outside of clinical trials) has been considered in France.
If you are in this situation and agree for your data to be used for this project, this has no direct implications for you.
What should you do about this study?
- If you would like more information about the processing of your data in the context of DESCAR-T and this project,
Or
- if you wish to exercise your rights regarding your data (access and rectification, limitation of their use),
⇒ inform the doctor at your hospital or centre of care for CAR T-cell therapy, who will contact LYSARC while maintaining your anonymity. You can also notify your decision by email at: dpo@lysarc.org
- Otherwise, you don’t have to do anything.
- You can find more information about your rights in relation to your data “I am participating or have participated in a trial