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 design and validation of a prognostic score that would make it possible to predict the risk of progression after CAR-T therapy in order to be able to offer a personalized follow-up.
Why is this study being implemented?
A clinical score is a tool to aid medical decision-making, combining several clinical observations into a single value. It involves weighing relevant signs (medical history, paraclinical tests, etc.) to aggregate them into a single numerical value, representative of the diagnosis or prognosis.
Diffuse large B-cell lymphoma (DLBCL) is the most common type of non-Hodgkin lymphoma. Current treatments allow for a cure in most patients. However, for some patients, these treatments are not sufficiently effective. Either the disease does not progress favorably (then referred to as “refractory”), or it relapses after a period of remission. Anti-CD19 CAR-T cell treatments have revolutionized the management of relapsed or refractory DLBCL.
Currently, there is no validated scoring system specifically designed to assess the outcome after a CAR T infusion for treating DLBCL.
What are the objectives of the study of the CAR-IPI study?
This study aims to design and validate a new prognostic score that would help predict the risk of progression after CAR-T treatment in patients with DLBCL.
How will this study be conducted?
This study is led by Dr. Estelle BOURBON and Prof. Emmanuel BACHY, members of LYSA, and hematologists at CHU Lyon Sud in Pierre Bénite.
This study is based on the development of an advanced mathematical method allowing a robust scoring system using variables available in routine practice. The model is designed and validated through the analysis of data from the medical records of patients participating in DESCAR-T.
The development of the method and the analyses are carried out by members of LYSARC.
The report of this study will be sent to the project leaders, who will only receive descriptive results without individual data. No link can be established between the data contained in the report and the patients whose data is collected in DESCAR-T.
This study, ” CAR-IPI” was initiated in May 2025.
The results of this study will be presented at international hematology scientific conferences and will be used for writing scientific publications starting in 2026
FOR PATIENTS PARTICIPATING IN DESCAR-T
What does this project mean for you?
This study is only for patients participating in DESCAR-T who have diffuse large B-cell lymphoma (DLBCL)and who have received CAR-T cells 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 are not opposed to the use of your data in the context of this study:
In this case, you don’t have to do anything
2. 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 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 participate in DESCAR-T.