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 focuses on patients who received CAR-T cells and who developed skin problems afterwards.
Why is this study being implemented?
The side effects on the skin related to CAR-T cell treatment are still little known and poorly described.
Based on the available data, they appear to be uncommon (about 4% of patients), and most often present as redness or non-specific rashes.
Currently, there are still few detailed studies, especially on the detailed analysis of the skin under the microscope, which limits the precise understanding of these reactions.
These skin effects are probably rare and not directly related to the main action of the treatment, as the target of the drug is not present in the skin, nails or mouth. However, it is important to better understand why these reactions occur, as several mechanisms could be involved, for example:
- Rebuilding the immune system after treatment
- A late reaction to chemotherapy
- Changes in small blood vessels
What are the objectives of the study?
This study aims to better understand the adverse effects of skin after treatment with CAR-T cells.
We will study how often skin problems occur, when they appear and with what severity. We will also analyze the possible appearance of new skin cancers after treatment. The study also aims to better understand the management of these effects and to compare the effectiveness of local and systemic treatments. We will investigate whether these skin manifestations are related to the effectiveness of CAR-T therapy.
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 who received CAR-T cell therapy and who had/had skin problems that developed after this treatment
This study is carried out by Prof. Vincent SIBAUD, dermatologist at the Oncopole Claudius Regaud Toulouse. It will have access to data on all patients participating in DESCAR-T who have received CAR-T cell therapy and who have/have had skin problems that have developed after treatment. This data will not make it possible to establish a link with the identity of the patients because it is pseudonymized: 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 June 2026.
ATTENTION TO PATIENTS PARTICIPATING IN DESCAR-T
What does this study mean for you?
This study is only in patients participating in DESCAR-T who received CAR-T cell therapy and who had/had skin problems that developed after CAR-T cell therapy.
If you are in this situation and you agree to have your data used for this study, it has no direct implications for you.
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 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 offered to 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 precise information onyour rights to object to the use of your data in the information note that was givien to you when you agreed to participate in DESCAR-T.