The DESCAR-T registry was set up at the request of the health authorities to improve knowledge of CAR-T cell therapies marketed in France to treat patients with hematologic malignancies. The aim of this registry is to support data on the short – and long-term efficacy and tolerability of these treatments in real life.
Thanks to the data collected, the registry makes it possible to carry out projects to answer specific research questions.
One of these projects is concerned with the validation of a new prognostic score (AusCART risk score) using the DESCAR-T registry, as an independent registry.
Why is this study being implemented?
CAR-T treatment is now a reference solution for certain aggressive lymphomas (R/R LBCL) that have returned after treatment or are resistant to treatment.
This study shows that simple information collected before treatment, such as during blood tests and routine tests, could help doctors better estimate:
- the chances of response to treatment;
- how long the disease remains under control;
- the risk of developing significant side effects.
What are the objectives of the study?
The aim of this study is to help medical teams to better personalise care and adapt the follow-up of each patient. These models have successfully stratified patients for both progression-free survival (PFS) and risk of high-grade toxicity, but now require external validation in an independent dataset.
And this is why an external validation of this prognostic score was done with the data from the DESCAR-T registry
How will the study be carried out?
This study will be based on the analysis of data from the medical records of patients participating in DESCAR-T and the questionnaires already completed by these patients.
These analyses will be carried out by members of LYSARC.
This external validation is carried out by Dr. Bachy, a physician at the Lyon Sud Hospital, and Dr. Dowling, from the Royal Melbourne Hospital and Peter MacCallum Cancer Centre. They will have access to data on all patients with relapsed LBCL lymphoma participating in the DESCAR-T study. This data will 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 study is scheduled to begin in February 2026.
FOR PATIENTS PARTICIPATING IN DESCAR -T
What does this study mean for you?
This study is only in DESCAR-T patients with relapsed R/R LBCL lymphoma who have received CAR-T therapy for their lymphoma.
If you are in this situation and you agree to have your data used for this study, it has no direct implications 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 object to the use of your data for this project:
⇒ in this case, you do not have to do anything
- You wish to object to the use of your data in this project:
⇒ in this case, please inform the doctor at the center where you have received your CAR T- treatement. You can also notify your decision by email at : dpo@lysarc.org.
You can find precise information on your rights to object to the use of your data in the information note that was given to you when you agreed to participate in DESCAR-T.