The REALYSA study aims to improve knowledge about lymphomas and the lives of patients with lymphomas. Thanks to the large number of patients who participate, it allows sub-studies to be conducted simultaneously on specific research questions. One of its sub-studies
called PANORAMA HL, is in patients with Hodgkin’s lymphoma.
Why is this study being implemented?
Hodgkin’s lymphoma has a specific epidemiological profile, with a large proportion of patients diagnosed before the age of 40, then another part around the age of 70. Age at diagnosis seems to play a role in the evolution of the disease.
Therapeutic strategies have evolved considerably in recent years, with the dual objective of improving the lifespan of patients while ensuring that adverse effects are limited: less radiotherapy, more intensive chemotherapy, treatments that adapt to intermediate imaging results, etc.
Another major objective of adapting treatments in Hodgkin lymphoma is to ensure a good quality of life for patients. Indeed, patients who are cured of Hodgkin’s lymphoma are at increased risk of impaired quality of life, especially persistent fatigue.
In this context, it is essential to analyse the evolution of the therapeutic management of patients in “real life” in France.
What are the objectives of the study?
The study aims to describe who are the patients with Hodgkin’s lymphoma treated in the 1st or 2nd line. Demographic data, as well as their state of health and the evolution of it, will be analyzed.
The study also aims to find out what treatments these patients received and how effective they are. The evolution of the quality of life of these patients will also be analyzed.
This so-called “real-life” data (as opposed to clinical trials) will be useful to better understand how patients are being cared for and what improvements should be considered. They will thus make it possible to improve future therapeutic protocols.
How will the study be carried out?
The study will be based on the analysis of data from the medical records of patients participating in REALYSA. These analyses will be carried out by members of LYSARC.
This study is carried out in collaboration with Prof. Hervé Ghesquières (Hospices Civils de Lyon) and Dr. Bénédicte Deau (AP-HP). No link can be made between the data contained in the reports and the patients participating in REALYSA.
The study will begin in March 2025.
TO THE ATTENTION OF PATIENTS PARTICIPATING IN REALYSA
What does this study mean for you?
This study only concerns patients participating in REALYSA who have Hodgkin Lymphoma.
If you are in this situation and you agree to your data being used for this study, this has no direct implication for you.
In particular, you will not have to answer any additional questionnaire compared to what is already planned as part of your participation in REALYSA.
What should you do about this study?
There are two options:
- You are not opposed to the use of your data in the context of this study:
- In this case, you don’t have to do anything.
- You wish to object to the use of your data in the context of this study:
- In this case, you must inform the doctor who offered you to participate in the REALYSA study. You can also notify your decision by writing an email to the following address: dpo@lysarc.org .
You will find detailed information on your rights to object to the use of your data on page 12 of the information notice that was given to you when you agreed to participate in REALYSA.