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12 June 2022

A support also for the experimentation

The research

Deux comités consultatifs suivent la vie du Village. Réunis en session plénière le 14 avril, ils ont notamment échangé sur les recherches en cours et les questionnements scientifique et éthique qui sont au cœur de leurs missions.

To begin, Professor Jean-François Dartigues, president of the scientific committee notes: "The caution that we have observed in the face of covid has limited observations and studies at the Village, especially since people with Alzheimer's disease are statistically three times more likely to be affected by the virus.”

Indeed, the observational studies carried out by the INSERM and INNOV’PAD teams have been impacted. Professor Hélène Amieva details the progress of her quantitative study: “The interviews at +12 months are being administered, a year of work will still be necessary to finalize everything”. Consequently, intervention studies which consist in analyzing the implementation of new treatments or procedures in order to study their effects and which must be carried out later in order not to influence passive observations, can only begin in 2024.

Until then, all future research must be anticipated. Professor Dartigues explains that “between the demanding research protocols and the search for funding, the preparation time for a scientific study is approximately one year. »

Because there are many requests, as evidenced by doctor Gaëlle Marie-Bailleul, coordinating geriatrician and referent of the establishment: "Student research can be an interesting partnership for the Village, but according to what criteria do we decide an agreement or a refusal? " This is typically an issue that is part of the missions of the scientific committee. Decision is made: student research will be authorized within the framework of studies carried out in the establishment (internship dissertations, intern theses, etc.). On the other hand, it will not be possible to give a favorable response to the 300 spontaneous requests for individual dissertations received to date. However, the Village wishes, within the framework of its "resource" function, to propose a framework of general information making it possible to follow up on these various requests, a framework which could take the form of webinars organized by the Public Interest Group (GIP ), pilot of the experiment.

“We must be careful, when we do studies related to Alzheimer’s disease, to evaluate the present moment and not the future.“ Jean-Francois Dartigues

Professor Hélène Amieva lays the foundations for future research: “To meet its ambition to also be an innovation in research, the Village must provide an approach and regulations. » Several possibilities are mentioned and discussed, for example responding to a national call for projects to obtain a framework for experimentation or directly launching calls for expressions of interest involving members of the GIP and this on themes chosen in collaboration with the committees. Professor Bernard Bioulac, president of the ethics committee, underlines that “any study in a place of life requires rigor and regulation. “ Jean-François Dartigues completes in the light of his experience of this cognitive disease: “You have to be careful, when you do studies related to Alzheimer’s disease, to assess the present moment and not the future.“

In the meantime, the establishment continues its life and offers developments in terms of support and care. The ethics committee supports it on two levels: sharing questions about the daily life of the establishment and arbitration on its general operating methods. In addition to the quarterly plenary meetings, these exchanges can be formalized in the form of direct exchanges, through referrals or independently by the various actors of the Village after a training course allowing to pass the ethical stages from the problem to the questioning.

Finally, it was also agreed to organize a national and international scientific symposium to bring together the community of actors with similar approaches for the benefit of people affected by neuro-evolutionary diseases.

Saïd Acef, director of the pilot GIP of the experimentation, concludes: “The desire is present and collective. The axes of work both in terms of research and ethics are laid down. With the end of the health crisis and the finalization of the working methodologies of the authorities, the work can start again on ambitious and promising bases.“

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