The DESCAR-T registry was set up at the request of the health authorities to improve our knowledge of CAR T-cell therapies marketed in France to treat patients diagnosed with hematological 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 investigating the efficacy and safety of CAR-T cells received by patients with non-Hodgkin lymphoma (NHL) with secondary central nervous system (CNS) involvement.
Why is this study being implemented?
Central nervous system lymphomas (CNS NHL) represent a group of rare lymphomas affecting the brain, cerebrospinal fluid, eye and much more rarely the spinal cord. Clinically, a distinction is made between primary and secondary CNS NHL. The former are strictly limited to the CNS. The latter are defined by concomitant systemic (extra-CNS) and CNS involvement or according to a previous systemic involvement before CNS localization.
The use of CAR-T cells has revolutionized the management of NHL, but it has been slow to include CNS NHL, which is excluded from clinical studies. Several studies have shown the effectiveness of this treatment in primary CNS NHL, notably by French teams, but many questions remain unresolved regarding secondary CNS NHL., and the DESCAR-T network seems particularly suited to answer them.
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 secondary CNS NHL. Its second objective is to describe the tolerance of these therapies and to identify possible prognostic factors, particularly at the neurological level.
If feasible, the previous objectives will be repeated by comparing primary and secondary CNS NHL and/or comparing secondary CNS NHL to systemic NHL and/or investigating differences in response and tolerance depending on the injected CAR T-cell product.
How will the study be carried out?
This study is led by Dr. CHOQUET and Prof. FORNECKER, respectively from the Pitié Salpêtrière (Assistance Publique des Hôpitaux de Paris) and the Strasbourg Cancer Institute (ICANS), with the support of the LOC network (National Expert Network for Oculocerebral Lymphomas) via Dr Caroline HOUILLIER.
The study will be based on the analysis of data from the DESCAR-T register. These analyses will be carried out by the LYSARC team. The report of this study will be sent to the project leaders, who will only receive descriptive results without individual data. No link can be established between the data contained in the report and the patients whose data is collected in DESCAR-T.
This study will be carried out in the first quarter of 2025 and the results should be communicated at international congresses on lymphoma and in a scientific article in 2025.
FOR PATIENTS WHO HAVE BEEN OFFERED CAR-T THERAPY IN FRANCE
What does this project mean for you?
This project concerns patients included in the DESCAR-T registry, diagnosed with non-Hodgkin Lymphoma, for whom CAR T-cell therapy has been injected (outside clinical trials) 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
- 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“.