On Thursday, 6 July 2023, the partners of the ADIS project convened for a consortium meeting to discuss the progress of their research. The meeting was divided into two parts, with the first part being held in the morning and the second part in the afternoon. The discussions centered around various topics, including project management, dissemination and outreach, experimental approaches, data collection, modelling, public involvement, and future applications.
The meeting commenced with opening remarks by the project coordinator Prof. Holger Fröhlich from Fraunhofer SCAI, acknowledging the importance of collaboration and expressing his gratitude to the consortium members for their dedication and contributions to the ADIS project.
Following the opening remarks, Vanessa Lage-Rupprecht (Fraunhofer SCAI) and Chris Bintener (Alzheimer Europe Project Communications Officer) presented on Project Management, Dissemination, and Outreach (WP1). They provided updates on the project’s management strategies, dissemination efforts, and outreach initiatives as well as future ideas. Their presentations highlighted the milestones achieved and the impact of the project in reaching out to the wider community.
Next, Andrea del Val Guardiola (Fundació Clínic per a la Recerca Biomèdica) led the discussion on Experimental Approaches and Data Collection (WP2). She covered various aspects, including the approval of ethics protocols (T2.0), the acquisition of clinical data and biosamples (T2.1), immune profiling (T2.2), and single-cell sequencing (T2.3). These activities are critical in obtaining valuable data that will contribute to a deeper understanding of Alzheimer’s disease (AD). So far, she highlighted that 24 people with Mild Cognitive Impairment (MCI) due to AD, 14 people with dementia due to AD and 20 cognitively healthy people have been enrolled in the ADIS study.
The first part of the meeting concluded with a presentation on Modelling (WP4), specifically agent-based modelling. Sophia Krix from Fraunhofer SCAI provided insights into the use of this modelling approach (T4.1) to study the dynamics of AD. The discussion revolved around the potential applications and challenges associated with agent-based modelling.
After a lunch break, the consortium reconvened for the second part of their discussions. The session began with the continuation of Modelling (WP4), focusing on AI and statistical modelling (T4.2). Sophia Krix elaborated on the application of these advanced modelling techniques to gain a deeper understanding of AD and its progression.
The meeting then shifted to Patient and Public Involvement (WP5), with Ana Diaz (Alzheimer Europe Project Officer) leading the discussion. The consortium members learned about the opinions and values of people with dementia (T5.1) and discussed the involvement of the Advisory Board (which is composed of 5 people with MCI due to AD as well as supported by consultations with members of the European Working Group of People with Dementia – EWGPWD). The session highlighted the importance of incorporating the perspectives and experiences of individuals with AD to ensure the relevance and impact of the research. Discussions with the Advisory Board revolved around information sheets (terminology, value, benefits and risks, length, amount of information, time to read and understand), its legal part (sharing and re-use of data, confidentiality and data protection, data re-identification) as well as the value (and challenges) of knowing an AD diagnosis in earlier (MCI) and later (dementia) stages. She then closed her presentation, explaining that the next in-person Advisory Board and EWGPWD consultations will be held on 15 and 16 November, revolving around Alzheimer Europe’s opinion paper on the informed consent process in dementia research from research participants’ perspectives and recommendations on how to design a participant information sheet.
Subsequently, the consortium engaged in a discussion about a review paper, that is currently being drafted.
Towards the end of the meeting, the consortium members had an opportunity to discuss future applications and projects. This session fostered innovative thinking and collaboration, laying the groundwork for potential future endeavours that can build upon the progress made within the ADIS project.
The meeting concluded with general topics, including a wrap-up session. The consortium members summarized the key takeaways from the meeting and expressed their appreciation for the productive discussions that took place.
The next General Assembly meeting will take place from 16–18 January in Barcelona (Spain).
