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 settings.
Thanks to the data collected, the registry allows the implementation of projects to address specific research questions. One of these projects focuses on Waldenström’s Macroglobulinemia or Waldenström’s disease (WM).
Why is this project being implemented?
Waldenström’s macroglobulinemia or Waldenström’s disease (WM) is a type of non-Hodgkin lymphoma (NHL). This rare cancer affects immune system cells called B lymphocytes, which start producing large amounts of an abnormal protein (called macroglobulin). In even rarer cases (about 5% of patients), WM transforms into Diffuse Large B-Cell Lymphoma (DLBCL), a more aggressive type of NHL. CAR-T therapy is indicated in the treatment of DLBCL after multiple relapses. However, there is still limited data on the efficacy and safety of CAR-T therapy in the treatment of transformed Waldenström’s disease.
What are the objectives of this project?
A project was carried out by Dr. Eric DUROT at the Reims University Hospital in 2023 to obtain information on the efficacy and safety of CAR-T therapy for patients with transformed Waldenström’s disease. The project “CAR-T Treatment of Transformed Waldenström’s Disease (2025 Update)” (other title: Anti-CD19 Chimeric Antigen Receptor T-Cell Therapy for Transformed Waldenström Macroglobulinemia/Lymphoplasmacytic Lymphoma: a DESCAR-T Registry and International Collaborative Study) is an update of this effort.
Dr. Eric DUROT is collecting cases of patients with transformed Waldenström’s disease internationally and has contacted LYSARC to use data from the DESCAR-T registry. Indeed, the DESCAR-T registry was established to collect data on these innovative therapies for all patients treated with commercially available CAR-T therapies in France.
How will the project be carried out?
In June 2025, LYSARC exported to Dr. Eric DUROT the data of patients diagnosed with transformed Waldenström macroglobulinemia included in the DESCAR-T registry.
The Reims University Hospital (CHU de Reims) is responsible for the exported data, and Dr. Eric DUROT will carry out the project analyses. LYSARC only has access to and transferred pseudonymized data (meaning it will not be possible to establish a link with the patients using these data).
FOR PATIENTS HAVING RECEIVED CAR-T IN FRANCE
What does this project involve you?
For patients included in the registry, particularly those diagnosed with transformed Waldenström’s disease,
What should you do about this project?
Two options are available:
You do not object to the use of your data for this project:
- In this case, you do not need to do anything.
You wish to object to the use of your data for this project:
- In this case, you must inform the doctor at your CAR-T treatment center. You can also notify your decision by sending an email to the following address: dpo@lysarc.org.
You will find more information on your rights to object to the use of your data in « Je participe ou j’ai participé à un essai »