The European Platform for Neurodegenerative Diseases (EPND) has launched a new ELSI Support Desk to support researchers and cohort representatives in navigating the ethical, legal, and societal aspects of data and biosample sharing in neurodegeneration research.

The ELSI Support Desk offers expert advice on a wide range of regulatory and compliance topics, including the General Data Protection Regulation (GDPR), research ethics approvals, data and biosample access, contractual arrangements, and the European Health Data Space (EHDS) regulation. It also addresses broader ELSI considerations that may arise when collaborating within the EPND ecosystem.

The launch comes at a time when researchers across Europe are required to comply with complex data protection rules, which aim to safeguard individuals’ rights while enabling responsible scientific progress. The ELSI Support Desk is here to help researchers interpret and apply EU frameworks such as the GDPR in the specific context of collaborative biomedical research.

The ELSI Support Desk is a key deliverable of the ethico-legal workstream of the EPND project, which is responsible for building a governance framework for the data and biosample sharing platform. This framework will help guide the responsible discovery and sharing of data and biosamples while protecting patient privacy and supporting cohorts to comply with applicable standards and best practices.

The service is jointly delivered by two core EPND consortium partners: the Luxembourg National Data Service (LNDS) and BBMRI-ERIC, a European biobanking research infrastructure with its central executive management office in Graz, Austria. Both organisations bring extensive expertise in European data governance and ethics, drawing on several years of collaboration in major international projects focused on data sharing in health research.

“The growing complexity of legal and ethical compliance requirements presents significant challenges for researchers in the neurodegeneration community,” said Davit Chokoshvili, Senior ELSI Specialist at the LNDS. “To address this need and assist the researchers in navigating such complexities, the EPND consortium has established its ELSI Support Desk. The ELSI Support Desk draws on several years of experience from LNDS and BBMRI-ERIC, including extensive collaboration between these partners across various European projects, and leverages our combined expertise to provide this support.”

Registered users, cohorts and researchers are invited to contact the ELSI Support Desk at ELSI@epnd.org for tailored ELSI guidance and support for their work within the EPND Hub.