The European Platform for Neurodegenerative Diseases (EPND) project is aiming for the acceleration of the discovery of diagnostics and treatment for neurodegenerative diseases by removing barriers to data and sample sharing and fostering collaboration to change the future for patients and their caregivers. The way to do this is to build an accessible, secure, scalable, and self-sustaining platform which will facilitate access to neurodegenerative disease data and clinical samples from across Europe.
For the success of the EPND project, one essential aspect is that the prospective biospecimen and associated data collection will be harmonised and standardised to ensure the highest possible quality. The use of uniform standard operating procedures in the consortium as well as the awareness of and adherence to existing standards, guidelines and best practices are crucial for this. For this reason, a survey was first conducted among some of the EPND partner cohorts to determine the status quo of their current biobanking practices.
Based on the survey results, the necessary topic areas for this best practice guideline were identified. Topics in which the surveyed partner cohorts still showed potential for improvement are dealt with in more detail.
