This deliverable, prepared by Work Package 3 (SOP development), reports on current practices for collecting, storing, and analysing digital biomarkers (DBMs) across EPND cohorts and related projects, with the aim of informing the design of a prospective digital biomarker study planned under Task 5.6.

A two-part online questionnaire was developed by VUmc and KCL, in collaboration with Alzheimer Europe, Gates Ventures, BBMRI, and Novartis, and drawing on expertise from the RADAR-AD project. The questionnaire covered general cohort information and detailed sensor-specific data. Fourteen cohorts responded to the first part and thirteen to the complete survey, spanning populations with Alzheimer's disease, Parkinson's disease, Lewy body disease, ataxia, and other neurodegenerative conditions.

Cohorts predominantly use wearable sensors, smartphone apps, and ambient sensors, mainly to monitor gait and cognitive function. Most data collection is GDPR-compliant and stored on secure servers. Key practical challenges reported include battery drainage, device usability, and technical reliability. Overall satisfaction with the sensors was good, though cohorts highlighted the need for improved usability to reduce data loss and increase participant compliance.

Feedback from cohorts has been limited to date. The questionnaire will be distributed to additional cohorts, and a follow-up workshop on digital biomarkers is planned to encourage broader participation and foster collaboration across studies.

For more information, find the full “Report on digital biomarker collections” here.