“The support is excellent” – Enrolling in a clinical trial with the CFRS, Maryse shares her experience
Maryse enrolled in a clinical trial through the Communauté Francaise pour la Recherche en Santé (CFRS). She hopes to contribute to the progress of research and finding a better treatment. Today, she tells us why she chose to participate in a clinical trial with the CFRS and what it’s like.
“We need volunteers to improve treatments and make medicine move forward. It’s important that people participate. Even if the trial doesn’t work for me, it can for others, that’s what’s important” Maryse explains.
Finding a relevant clinical trial
Maryse was diagnosed with COPD over 10 years ago. “I have to do everything much more slowly. And obviously not live at 100 km/h. There are days when it is very complicated, and days when it is fine.”
“I’m not the kind of person who is overwhelmed by illness, so I try not to take it so much into account. It’s true that sometimes it’s hard to breathe, but it’s been that way for a long time, so I know how to deal with it,” she adds.
Maryse explains how she was made aware of CFRS (James Lind Care’s French patient community),
“I saw the questionnaires on Facebook and I believe we need volunteers so that medicine can move forward. I filled in the questionnaire and was contacted a short time later.”
Maryse adds “I want to participate to help find medications that are much more suitable. Even if it doesn’t work for me, it may work for other people, and thus allow for better treatments in the future”.
After completing the questionnaire, she was contacted by our research nurse. At the moment, she can’t start the clinical trial. Nevertheless, she explains that the CFRS and the hospital in charge of the clinical trial still provide her with support and guidance, which she particularly appreciates
“At the moment, I’m not part of the trial and yet they keep in touch with me. They call me, and they keep me informed.”
A human touch
Participating in research is a long and sometimes complex journey for the patient. At James Lind Care, we strive to keep this in mind, creating positive and transparent relationships with patients and offering them appropriate support and guidance.
Maryse shares her experience with our research nurse and says: “The CFRS nurse who contacted me was very nice. She is a very good listener, kind and gentle. I especially liked that she took her time to explain what the research was about and ask me about my journey. She explained things very well.”
Being close, understanding, and responsive to participants is paramount. Our research nurses understand this and make sure everything goes smoothly.
“The first thing the CFRS nurse did when she got back from vacation was call me to see how things were going. Not everyone would do that.”
“The support is excellent. I don’t know what more I could ask for, really.”
Being well informed
The link formed between the patient and the CFRS research nurse also simplifies the contact and the relationship with the site in charge of the clinical trial. Indeed, our research nurses strive to inform participants in the best possible way and to discuss all important and relevant points.
“The process is very straightforward. The nurse explained everything well, she gave me time to write down what I needed to do, and what I needed to ask for in order to put the file together. It was really simple.”
The French research nurse remains in contact with Maryse. She is particularly attentive to the well-being of the patients and to creating a beneficial and reassuring dialogue with them.
By developing patient communities, like the CFRS, we want to make sure that patients feel safe and guided throughout their journey in clinical research. It’s important for our research nurses to be able to talk and interact with patients, and to explain and inform all the details of the trial.
Written by Camille Pujol