On 4 April, the CHU de Toulouse (CHUT) hosted the first meeting of the Research Participant Panel of the European Prevention of Alzheimer’s Dementia Consortium (EPAD) in France. We caught up with a French Research participant to know what it is like to take part in a research study and find out about his experiences.
What motivates you to be a research participant in a research project like EPAD? What motivated me first was my personal anxiety about my memory loss. I thought that it would be very interesting to participate in this project. On the other hand, we need motivated people willing to take part in research and keep things moving.
You have joined the EPAD project for a year now. Could you please tell us about your experience? First of all I was very surprised by some study assessments such as saliva tests. Apart from that, I find the experiment very interesting. On the health front, the participation consists of regular assessments including MRI, cognitive and biological tests. This experience offers me reassurance.
What is it like to have a lumbar puncture? Although, I was very scared for my first lumbar puncture, I really wanted to do it to be reassured and to know if I have biomarkers of Alzheimer’s disease. The second time I took a drug and everything went very well, without pain and concerns.
You are now a member of the EPAD Participant Panel in Toulouse, of which the first meeting has just held. What are your expectations and the topics you would like to raise with the participant group? I do not have any particular expectations. I would like, through these meetings, be able to know more about the conducted research. I find interesting that we can stay informed about the study and its results. I would also like to take advantage of these meetings to share my experience within EPAD and in the service.
What message would you like to send to the researchers and partners of the project? The research team is really nice. It is really important to see this collective commitment. They know how to put us in confidence and to set us at our ease. This is really appreciate and key for all the exams. For that, I would like to express my gratitude to them. I feel anxious very quickly and the involvement and professionalism of the team is thus really appreciable.