On 4 April, the CHU de Toulouse (CHUT) hosted the first meeting of the\nResearch Participant Panel of the European Prevention of Alzheimer\u2019s Dementia\nConsortium (EPAD) in France. We caught up with a French Research participant to\nknow what it is like to take part in a research study and find out about his\nexperiences.<\/p>\n\n\n\n
What motivates you to be a research participant in a\nresearch project like EPAD? <\/strong>What\nmotivated me first was my personal anxiety about my memory loss. I thought that\nit would be very interesting to participate in this project. On the other hand,\nwe need motivated people willing to take part in research and keep things\nmoving.<\/p>\n\n\n\n You have joined the EPAD project for a year now. Could you please tell\nus about your experience? <\/strong>First of all I was\nvery surprised by some study assessments such as saliva tests. Apart from that,\nI find the experiment very interesting. On the health front, the participation consists\nof regular assessments including MRI, cognitive and biological tests. This\nexperience offers me reassurance.<\/strong><\/p>\n\n\n\n What is it like to have a lumbar puncture<\/strong>?<\/strong> Although,\nI was very scared for my first lumbar puncture, I really wanted to do it to be\nreassured and to know if I have biomarkers of Alzheimer’s disease. The second\ntime I took a drug and everything went very well, without pain and concerns.<\/p>\n\n\n\n You are now a member of the EPAD Participant Panel in Toulouse,\nof which the first meeting has just held. What are your expectations and the\ntopics you would like to raise with the participant group? <\/strong>I do not have any particular expectations. I would\nlike, through these meetings, be able to know more about the conducted research.\nI find interesting that we can stay informed about the study and its results. I\nwould also like to take advantage of these meetings to share my experience\nwithin EPAD and in the service.<\/strong><\/p>\n\n\n\n What message would you like to send to the researchers\nand partners of the project?<\/strong> The\nresearch team is really nice. It is really important to see this collective\ncommitment. They know how to put us in confidence and to set us at our ease.\nThis is really appreciate and key for all the exams. For that, I would like to express\nmy gratitude to them. I feel anxious very quickly and the involvement and professionalism\nof the team is thus really appreciable.<\/strong><\/p>\n\n\n\n French:<\/p>\n\n\n\n Le 4 avril, le CHU de Toulouse (CHUT) a accueilli la premi\u00e8re r\u00e9union du panel de participants \u00e0 la recherche du projet EPAD en France. Nous avons discut\u00e9 avec un participant \u00e0 la recherche pour savoir ce que cela repr\u00e9sente de participer \u00e0 une \u00e9tude de recherche et d\u00e9couvrir ses exp\u00e9riences. <\/p>\n\n\n\n Quelles ont \u00e9t\u00e9 les motivations qui\nvous ont amen\u00e9 \u00e0 participer au projet EPAD? <\/strong>Ce qui m’a motiv\u00e9 en premier c’est\nmon angoisse personnelle concernant mes pertes de m\u00e9moire et je me suis dit\nqu’il \u00e9tait tr\u00e8s int\u00e9ressant pour moi de participer \u00e0 ce projet. D’autre part,\nil faut des personnes volontaires et motiv\u00e9es pour participer \u00e0 la recherche et\nfaire avancer les choses. <\/p>\n\n\n\n Vous \u00eates dans le protocole EPAD depuis 1 an maintenant, pouvez-vous nous parler un peu de votre exp\u00e9rience? <\/strong>Tout d’abord j’ai \u00e9t\u00e9 tr\u00e8s surprise par certains tests, comme les pr\u00e9l\u00e8vements de salive par exemple ! A part cela, je trouve l’exp\u00e9rience int\u00e9ressante, sur le plan m\u00e9dical \u00e9tant donn\u00e9 qu’on b\u00e9n\u00e9ficie d’un IRM et de tests cognitifs et biologique chaque ann\u00e9e. Cette exp\u00e9rience m’a rassur\u00e9e. <\/p>\n\n\n\n Vous avez eu des ponctions lombaires,\npouvez-vous nous dire quel effet cela fait? <\/strong>J’avais tr\u00e8s peur, mais j’ai voulu\nabsolument faire cette ponction lombaire pour \u00eatre rassur\u00e9e et pouvoir savoir\nsi j’avais des biomarqueurs de la maladie d’Alzheimer. La premi\u00e8re fois, j’ai\neu vraiment tr\u00e8s peur, la seconde fois j’ai pris un d\u00e9contractant et tout s’est\ntr\u00e8s bien pass\u00e9, sans douleur ! <\/p>\n\n\n\n Vous fa\u00eetes partie du participant panel, dont la premi\u00e8re r\u00e9union s’est tenue aujourd’hui, quelles sont vos attentes et les th\u00e8mes que vous souhaiteriez aborder? <\/strong>Je n’ai pas d’attentes particuli\u00e8res. J’aimerai, \u00e0 travers ces r\u00e9unions, pouvoir connaitre un peu l’\u00e9volution de la recherche. Je trouve int\u00e9ressant qu’on puisse nous donner l’\u00e9volution de l’\u00e9tude et ses r\u00e9sultats. J’aimerai aussi profiter de ces r\u00e9unions pour pouvoir faire un retour sur mon exp\u00e9rience dans EPAD et dans le service. <\/p>\n\n\n\n Quel message souhaiteriez-vous faire passer aux \u00e9quipes de recherche et aux partenaires du projet? <\/strong>L’\u00e9quipe de recherche est vraiment sympathique et c’est tr\u00e8s important car cela aide beaucoup ! Ils nous mettent en confiance ce qui est c’est essentiel pour tous les examens. Ils savent nous mettre \u00e0 l’aise et rien que pour cela je voudrais les remercier. Je suis quelqu’un qui s’angoisse tr\u00e8s vite et pour moi tout cela est appreciable.<\/p>\n","protected":false},"excerpt":{"rendered":" On 4 April, the CHU de Toulouse (CHUT) hosted the first meeting of the Research Participant Panel of the European Prevention of Alzheimer\u2019s 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. 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