The REALYSA study aims, among other things, to better understand the experience of people with different types of lymphoma in France, and in particular the impact of these diseases on their quality of life (QoL). There is currently very little data on the quality of life of lymphoma patients in France, on the parameters that influence this quality of life and on the potential role of the patient quality of life in the response to lymphoma treatment.
The REALY-QoL project will analyse quality-of-life related data of patients participating in REALYSA, collected at different timepoints during their follow-up. The aim is to better understand the impact of lymphoma on the patients’ quality of life, both at diagnosis and during their follow-up, to ultimately help identify patients with a low level of quality of life and who could benefit from further support in addition to their medical care.
This project is a collaboration between 7 European research teams (the Centre Léon Bérard, the GIMEMA (the Italian Adult Haematological Diseases Group), Lyon University Hospital (Hospices Civils de Lyon), the LYSARC, Lyon 2 University, and Montpellier University Hospital and Montpellier Cancer Institute). The project will be coordinated by Amélie Anota (Centre Léon Bérard (Cancer Centre) and the Plateforme Qualité de Vie et Cancer (Cancer and Quality of Life Platform) in Lyon).
This project is financially supported by the INCa (Institut national du cancer) and will be carried out over 2022, 2023 and 2024.
To all patients participating in REALYSA, and more particularly for patients with Hodgkin’s lymphoma, diffuse large B-cell lymphoma or follicular lymphoma.
The analysis will be carried out on data collected from the quality-of-life questionnaires already made available to the patients participating in REALYSA. You will not be asked to fill in any additional questionnaires.
If you do not object to the use of your data for this project you do not need to do anything.
If you wish to object to the use of your data for this project, you can contact your doctor at the care centre who invited you to take part in REALYSA or make a request at dpo@lysarc.org, as described in the Patient Information Leaflet you received at the beginning of your participation in the study. You can find in this document all the information on your rights regarding your personal data.