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.
Why is this study being implemented?
Diffuse Large B-Cell Lymphoma (DLBCL) is the most common type of non-Hodgkin lymphoma. Current treatments can cure most patients. However, these treatments may not be effective enough for some patients. Either the disease progress despite the treatment (it is then considered “refractory”), or it relapses after a period of remission. The number of treatment lines following relapse varies from patient to patient. The advent of CAR-T cell treatments has opened new perspectives on the treatment of the disease.
What are the objectives of the study?
The study aimed to describe for the first time the real-life profile of DLBCL patients who were offered CAR-T cell therapy. In particular, it demonstrated that CAR-T cell therapy was a key treatment in relapsed or refractory DLBCL patients after at least 2 lines of treatment.
How the study was carried out?
The data analysis was conducted by LYSARC members in 2021.
No link can be established between the published results and the patients whose data are collected in the DESCAR-T registry.
The results of this study have been presented at international lymphoma conferences and will be used to write scientific publications.
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 Diffuse Large B-Cell Lymphoma, for whom CAR T-cell therapy has been considered (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
- if you wish to exercise your rights regarding your data (access and rectification, limitation of their use),
⇒ inform the doctor at your hospital or center 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“.