This deliverable presents the interim report of the EPND Patient Expert Group (PEG) on principles for health data and biosample sharing and re-use, and on the development of a lay glossary of research-related terms. The work was led by Alzheimer Europe (AE) and supported by the Federación Española de Párkinson (FEP), drawing on consultations with the European Working Group of People with Dementia (EWGPWD) and the Parkinson's Advisory Group (GAP) conducted between June 2023 and February 2024.

Part 1 reports on PEG feedback on the principles underpinning health data and biosample sharing and re-use in the context of research. Participants expressed broad support for data sharing, motivated by altruism, reciprocity, and the desire to advance drug development. Key concerns centred on anonymity, transparency, conditions for sharing with commercial organisations, geographical boundaries, and the need for clearer informed consent documentation. A set of targeted recommendations is provided for researchers and EPND partners.

Part 2 covers the development of a lay glossary currently containing over 200 terms across domains including Parkinson's disease, Alzheimer's disease and dementia, research methodology, data sharing, data protection, ethics, and diversity. The PEG provided feedback on structure, accessibility, navigability, and content. Both workstreams will be further developed and consolidated in the final PI deliverable (D6.10).

For more information, find the full Deliverable report here.