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Interview with an EPAD research participant

2019-05-02News

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.


French:

Le 4 avril, le CHU de Toulouse (CHUT) a accueilli la première réunion du panel de participants à la recherche du projet EPAD en France. Nous avons discuté avec un participant à la recherche pour savoir ce que cela représente de participer à une étude de recherche et découvrir ses expériences.

Quelles ont été les motivations qui vous ont amené à participer au projet EPAD? Ce qui m’a motivé en premier c’est mon angoisse personnelle concernant mes pertes de mémoire et je me suis dit qu’il était très intéressant pour moi de participer à ce projet. D’autre part, il faut des personnes volontaires et motivées pour participer à la recherche et faire avancer les choses.

Vous êtes dans le protocole EPAD depuis 1 an maintenant, pouvez-vous nous parler un peu de votre expérience? Tout d’abord j’ai été très surprise par certains tests, comme les prélèvements de salive par exemple ! A part cela, je trouve l’expérience intéressante, sur le plan médical étant donné qu’on bénéficie d’un IRM et de tests cognitifs et biologique chaque année. Cette expérience m’a rassurée.

Vous avez eu des ponctions lombaires, pouvez-vous nous dire quel effet cela fait? J’avais très peur, mais j’ai voulu absolument faire cette ponction lombaire pour être rassurée et pouvoir savoir si j’avais des biomarqueurs de la maladie d’Alzheimer. La première fois, j’ai eu vraiment très peur, la seconde fois j’ai pris un décontractant et tout s’est très bien passé, sans douleur !

Vous faîtes partie du participant panel, dont la première réunion s’est tenue aujourd’hui, quelles sont vos attentes et les thèmes que vous souhaiteriez aborder? Je n’ai pas d’attentes particulières. J’aimerai, à travers ces réunions, pouvoir connaitre un peu l’évolution de la recherche. Je trouve intéressant qu’on puisse nous donner l’évolution de l’étude et ses résultats. J’aimerai aussi profiter de ces réunions pour pouvoir faire un retour sur mon expérience dans EPAD et dans le service.

Quel message souhaiteriez-vous faire passer aux équipes de recherche et aux partenaires du projet? L’équipe de recherche est vraiment sympathique et c’est très important car cela aide beaucoup ! Ils nous mettent en confiance ce qui est c’est essentiel pour tous les examens. Ils savent nous mettre à l’aise et rien que pour cela je voudrais les remercier. Je suis quelqu’un qui s’angoisse très vite et pour moi tout cela est appreciable.

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Authors investigated #data from nine studies, including @IMI_EPAD, comprising a total of 60,004 assessed participants. If you want to explore the #Alzheimer's disease data landscape, visit adata.scai.fraunhofer.de @BirkenbihlC @ApitiusHofmann @ddomingof @Simon_Lovestone @TVB_cloud

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Numerous studies have collected #Alzheimer's disease cohort #data sets. @BirkenbihlC and colleagues have evaluated the Alzheimer's disease data landscape from a patient‐level data‐centric perspective. @IMI_EPAD @IMI_EMIF @NACCALZ alz-journals.onlinelibrary.wi…

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