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 are these studies being implemented?
Follicular lymphoma (FL) is one of the main types of non-Hodgkin lymphoma. However, these treatments may not be effective enough for some patients. Either the disease progresses 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 up new perspectives on the treatment of the disease. In addition, one of the CAR-T treatments, Tisagenlecleucel (Tisa-cel), has been approved for the treatment of patients with FL after 2 lines of treatment. The study of their tolerance and effectiveness then becomes a priority.
The DESCAR-T registry collects data from the medical records of patients who are offered CAR-T in France, whether they ultimately receive CAR-T or not. These data provide a better understanding of the characteristics of the disease and the profile of these patients. The registry also makes it possible to evaluate the efficacy and tolerability of CAR-T therapies in real life.
What are the objectives of these studies?
2 studies were conducted using these data:
The first study described for the first time the real-life profile of FL patients who were offered CAR-T cell therapy.
The second study demonstrated and confirmed that CAR-T cell therapy, including Tisa-cel, was a key treatment in relapsed or refractory FL patients after at least 2 lines of treatment.
How the studies were carried out?
These two projects are led by Dr. BACHY from the Lyon Sud University Hospital and Dr. YSEBAERT from the Toulouse Oncopole. The data analysis was carried out by the LYSARC team in 2022 for the first study, that of the second study is still ongoing.
They had access to data on all patients with LF lymphoma who participated in the DESCAR-T study. This data does not make it possible to establish a link with the identity of the patients because it is pseudonymised: the first and last names of each person are replaced by a unique number assigned when they are included in DESCAR-T. LYSARC and its partners cannot link this number to a patient’s identity.
The results of these studies will be presented at international hematology scientific congresses and will be used in the writing of 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 Follicular 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.
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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“.