ADIS Advisory Board discusses data management and confidentiality

ADIS 2 AB consultation

On 7 February, Cristina, Kina, García, Ricard and Pilar (members of the ADIS-Advisory Board), and their supporters, held a second online consultation in the context of our Public Involvement activities. As in the first consultation, this meeting focused on the informed consent process in research projects on Alzheimer’s disease.

Members of the Advisory Board provided their perspectives on data management and confidentiality in research studies and how these topics are presented in the information sheet and informed consent form of the ADIS project.

Together with the feedback gathered during the first consultation (focused on terminology, tone and content), the ideas collected aim to lead to the development of guidelines on how to design a participant information sheet and informed consent form for research studies on Alzheimer’s disease in a user-friendly and understandable way. These guidelines are aimed at researchers.

The consultation was lively, with all the members actively providing valuable feedback. The discussion was facilitated by Alzheimer Europe Project Officers Soraya Moradi-Bachiller and Ana Diaz and also attended by neuropsychologist Andrea del Val Guardiola (Fundació Clínic per a la Recerca Biomèdica, Spain) and Jesús Rodrigo (Confederación Española de Alzheimer, Spain).

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