On 7 February, Cristina, Kina, García, Ricard and Pilar (members of the ADIS-advisory board (ADIS-AB)), and their supporters, met online for the second consultation in the context of Public Involvement activities of the ADIS project. As in the first consultation, this meeting focused on the informed consent process in research projects on Alzheimer's disease. Members of the ADIS-AB were asked to provide 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 on 24 January (about terminology, tone and content), the ideas collected during this meeting will help Alzheimer Europe to develop guidelines for researchers on how to design a participant information sheet and informed consent form for research studies on Alzheimer's disease. The consultation was lively, with all the members actively providing valuable feedback. The discussion was facilitated by AE Projects 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). For more information about the ADIS project, please visit: https://www.adis-project.eu/
Members of the ADIS advisory board discuss data management and confidentiality in the project
07/02/2023