The DESCAR-T registry has been created to meet a request from the French Health Authorities to collect data in order to consolidate the knowledge on the efficacy and safety at both short- and long-term of all CAR T-cell therapies marketed in France.
YESCARTA® is one of these treatments, developed by Gilead. The IMPA-CT project, carried out by Gilead, aims to better understand the organizational impact of these new therapies on the management of lymphoma in France, and more particularly their impact on the care centers qualified to deliver these treatments.
In the context of this project, Gilead will be working with a service provider specialised in medico-economic evaluation that will be responsible to carry out the analysis. This project will help provide Health authorities with more information on the general impact of the introduction of CAR-T cells on the French healthcare system. This project will use, among others, data from the DESCAR-T registry. Gilead will only receive descriptive reports, where the results will be aggregated and anonymized. The company will not receive any individual data. An information letter will also be shared by the physicians with the patients concerned.
The first data extraction for this project was done in April 2022, the final extraction will be performed in September 2022.
For patients who have received CAR-T, if you wish to object to the use of your data for this project, you can contact the doctor at your care centre for your CAR-T cell treatment or make a request at dpo@lysarc.org. You will also find more details about your rights concerning your personal data on the homepage, in the section “I am participating or have participated in a clinical trial”, or in the Patient Information Leaflet you received at the time of your inclusion in the DESCAR-T registry.