The DESCAR-T registry was set up at the request of health authorities to improve knowledge about CAR-T cell therapies marketed in France for treating patients with malignant haematology. The objective of this register is to support data on the short- and long-term efficacy and tolerance of these treatments in real life.
Using the data collected, the registry allows projects to be conducted to answer specific research questions. One of these projects focuses on the results of treating follicular lymphoma with tisagenlecleucel (tisa-cel) or axicabtagene ciloleucel (axi-cel).
Why is this study being implemented?
Follicular lymphoma (FL) is one of the main types of non-Hodgkin lymphoma. Current treatments can cure the majority of patients. However, these treatments may not be effective enough for some patients. Either the disease progresses despite treatment (it is then considered “refractory”) or it relapses after a period of remission. The number of lines of treatment following relapse varies from patient to patient. The advent of CAR-T cell therapies has opened up new perspectives on the treatment of the disease.
Anti-CD19 CAR-T cells are registered in Europe for patients with follicular lymphoma (FL) as a third-line (tisa-cel) or fourth-line (axi-cel) treatment. Studying their safety and efficacy remains a priority.
What are the objectives of the “FL Population Study-Update” study?
This study is a late 2024 update of the data and analyses conducted in 2022 to confirm the excellent results obtained after infusion of axi-cel or tisa-cel in patients with relapsed or refractory FL.
How will this study be conducted?
This study is based on the analysis of data from the medical records of patients participating in DESCAR-T.
This study is led by Dr. BACHY from Lyon Sud University Hospital and Dr. YSEBAERT from Oncopole in Toulouse. Data analysis was carried out by members of LYSARC.
They have access to data on all patients with follicular lymphoma (FL) participating in the DESCAR-T study. It is not be possible to establish a link between the data and the identity of the patients because data are pseudonymized: the name and surname of each person are replaced by a unique number assigned at inclusion in DESCAR-T. LYSARC and its partners cannot link this number to a patient’s identity.
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This “Population FL-Update” study was initiated at the end of 2024.
The results of this study were presented in a Poster at an international hematology scientific conference in 2025 and will be used to draft a scientific publication in 2026.
FOR PATIENTS PARTICIPATING IN DESCAR-T
What does this study mean for you?
This study is only for patients participating in DESCAR-T who have follicular lymphoma (FL) and who have received axi-cel or tisa-cel treatment for their lymphoma.
If you are in this situation and you agree that your data be 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 DESCAR-T.
What should you do about this study?
There are two options:
- You do not opposed to the use of your data in the context of this study:
⇒ in this case, you do not 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 suggested you participate in the DESCAR-T study. You can also notify your decision by writing an email to the following address: dpo@lysarc.org.
You will find detailed information about your rights to object to the use of your data in the information provided to you when you agreed to participated in DESCAR_T.