The REALYSA study aims to improve knowledge about lymphomas and the lives of lymphoma patients. Thanks to the large number of patients involved, it allows sub-studies on specific research questions to be conducted simultaneously. One of his substudies, called FRENCH CONNECT, involves patients who have diffuse large B-cell lymphoma or Hodgkin’s lymphoma.
Why is the FRENCH CONNECT study being implemented?
Diffuse large B-cell lymphoma and Hodgkin lymphoma are two common types of adult lymphoma. Thanks to the progress made in recent years, the outcome of patients with these lymphomas has been significantly improved. Studies have shown that the faster a patient responds to his first treatment (from 2 courses), the more favorable the evolution of his disease. Today, this early response to treatment is evaluated with PET scans.
Thanks to the evolution of DNA analysis techniques (so-called sequencing), it is now possible to follow the evolution of the disease also at the biological level. In particular, it has been shown that the DNA of the tumor circulates in the blood and that it can be identified (indeed, tumor cells have a different DNA than normal cells). The FRENCH CONNECT study is designed to improve knowledge and analysis of tumor DNA.
What are the objectives of the FRENCH CONNECT study?
The FRENCH CONNECT study aims first of all to harmonize practices for studying circulating tumor DNA in the blood. Several French centers are working together to test the different technologies at their disposal, to select the best genes to look at according to the different forms of lymphomas, and to standardize the computer processing of the data obtained.
The objective of this study is also to confirm the ability of circulating tumor DNA to predict the evolution of the disease very early when a treatment is implemented, in addition to the PET scans. In the end, the study will make it possible to evaluate the interest of this new tool for patient care.
How will the FRENCH CONNECT study be carried out?
The study is based on the analysis of clinical and imaging data already contained in patients’ medical records, and blood samples taken at the time of diagnosis and after two courses of the first treatment they received.
The data analyzed in this study will not make it possible to establish a link with the identity of the patients because they are pseudonymized: the name and surname of each person are replaced by a unique number assigned at the time of inclusion in REALYSA. LYSARC and its partners cannot link this number to a patient’s identity.
Led by LYSA and CALYM, the FRENCH CONNECT study is coordinated by Professor Marie-Hélène Delfau-Larue.
The analysis of REALYSA patient data within the FRENCH CONNECT study is scheduled to begin in April 2023.
FOR PATIENTS PARTICIPATING IN REALYSA
What does the FRENCH CONNECT study mean for you?
This study only includes patients participating in REALYSA who have diffuse large B-cell lymphoma or Hodgkin’s lymphoma.
If you are in this situation and you agree to your data and blood samples being used for the FRENCH CONNECT study, this has no direct implication for you.
In particular, you will not have any additional deduction compared to what is already provided for as part of your participation in REALYSA.
What should you do about the FRENCH CONNECT study?
There are two options:
- You are not opposed to the use of your data and samples as part of the FRENCH CONNECT study:
è In this case, you don’t have to do anything
- You wish to object to the use of your data and samples as part of the FRENCH CONNECT study:
è In this case, you must inform the doctor who suggested you 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 about your rights to object to the use of your data on page 12 of the information provided to you when you agreed to participate in REALYSA.