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 setting.
Thanks to the data collected, the registry makes it possible to carry out projects to answer specific research questions. It also makes it possible to support theses in medicine or in social sciences and health, such as this work by Théau BRIGAND entitled “The cell, the industry and the hospital; the healthcare system and the CAR-T promise”.
Why is this study being implemented?
This study offers an analysis in sociology, social sciences and health on the introduction of the first CAR-T therapies on the market and on their transformational impact on the French health system, particularly in terms of cost, organization of care and market access. In this context, the thesis focuses on the DESCAR-T register in two distinct ways.
First, the DESCAR-T registry and its data provide a quantitative visualization of the creation and expansion of the national CAR-T market, as well as its evolution over time, as the use of these therapies normalizes and learning progresses. Secondly, the DESCAR-T registry represents an organisational, scientific and regulatory innovation in itself. Having arrived on the market with limited levels of evidence, CAR-T therapies and their therapeutic value were demonstrated within the clinic and hospital environment. The DESCAR-T registry thus makes it possible to transform a series of singular cases into a generalizable dataset, the analyses of which are recognized and accepted by biomedical authorities.
What are the objectives of the study?
The study documents the transformations of the French health system in the light of CAR-T therapies; particularly in the regulatory, organizational and financial dimensions.
How was the study carried out?
Théau Brigand’s work focuses on the different actors involved in the deployment and use of CAR-T cell therapies in France (pharmaceutical laboratories, hospitals, etc.). Among other things, he was interested in the implementation and operation of the DESCAR-T registry through interviews with LYSARC team.
The registry provided aggregated data that was sent to Théau in order to describe the deployment of CAR-T cells in France and to try to quantify the learning by the centers about the use of these therapies. For example, the distribution of centres that can administer CAR-T cells across the country between 2018 and 2023, the number of CAR-T cells prescribed per year and per indication, etc. No link can be established between the shared results and the patients whose data are collected in DESCAR-T.
This thesis written by Théau BRIGAND is entitled “The cell, the industry and the hospital; the healthcare system and the CAR-T promise”. It was defended late September 2024.
FOR PATIENTS WHO HAVE BEEN OFFERED CAR-T THERAPY IN FRANCE
What does this project mean for you?
This project concerns all patients included in the DESCAR-T registry.
If you are in this situation and agree for your data to be used for this project, this has no direct implications for you.
What should you do about this study?
- If you would like more information about the processing of your data in the context of DESCAR-T and this project,
Or
- if you wish to exercise your rights regarding your data (access and rectification, limitation of their use),
⇒ inform the doctor at your hospital or centre of care for CAR T-cell therapy, who will contact LYSARC while maintaining your anonymity. You can also notify your decision by email at: dpo@lysarc.org.
- Otherwise, you don’t have to do anything.
You can find more information about your rights in relation to your data “I am participating or have participated in a trial“.