Waldenström’s Macroglobulinemia (WM) is a type of non-Hodgkin’s lymphoma (NHL). This rare cancer affects the cells of the immune system called B lymphocytes, which start producing large amounts of an abnormal protein (called macroglobulin). In even rarer cases (about 5% of patients), WM turns into Diffuse Large B-Cell Lymphoma (DLBCL), a more aggressive type of NHL. CAR T-cells are indicated for the treatment of LDGCB after multiple relapses. However, there are still limited data on the efficacy and safety of CAR-Ts in the treatment of transformed WM.

A project has been initiated by Dr. Eric Durot, at the University Hospital of Reims, to gain insight into the efficacy and safety of CAR-T cells for patients diagnosed with transformed WM. Dr. Eric Durot is gathering cases of patients with transformed WM treated by CAR T-cells internationally and has contacted LYSARC to use the data from the DESCAR-T registry. Indeed, the DESCAR-T registry was initiated in order to collect data on these innovative therapies for all patients treated with CAR-Ts marketed in France.

In April 2023, the LYSARC will export to Dr Eric Durot data on the patients diagnosed with transformed Waldenström Macroglobulinemia included in the DESCAR-T registry. The University Hospital of Reims will become responsible for the exported data and Dr. Eric Durot will conduct the analyses for this project. The LYSARC only has access to and will transfer only pseudonymized data (i.e., it is not possible to link this data to the patient).

To patients in the DESCAR-T registry, and more particularly those initially diagnosed with transformed Waldenstrom Macroglobulinemia, if you would like more information about the processing of your data in this project, or more generally in the DESCAR-T Registry, you can contact the doctor at your care center for your CAR-T treatment or make a request at dpo@lysarc.org. You can also find more details your rights regarding your personal data in the homepage, in the section “I am participating or have participated in a clinical trial“.