EPND Glossary Feedback Survey

The European Platform for Neurodegenerative Diseases (EPND) Glossary was established to lay the foundation for consistent, high-quality use of neurodegenerative disease terminology within the EPND. The EPND Glossary consists of 11 Modules, ranging from legal, data, business, and clinical definitions, and aims at harmonising scientific exchange and communication within the EPND.

Background and aims

The aim of this present survey is to improve the EPND Glossary. The objective is to gather opinion-based feedback to evaluate the existing glossary entries, and to identify potential unmet needs that have not been addressed by the glossary.


Gathering opinion-based feedback from members of the EPND with a plethora of roles (business, legal, clinical, scientific) will enable us to optimise the Glossary we created to support transdisciplinary collaboration, and its utility for the project as well as for users external to EPND. Key features of the Glossary will be assessed by using Likert scale questions, but also by gathering feedback and suggestions for improvement within the expertise of the respondents.

Course of the survey

The participants will receive a questionnaire which gauges their expertise and will be asked to review the glossary modules and definitions based on key parameters such as exhaustiveness, clearness, and importance. The questionnaire will be brief and any input will be analysed to identify strengths and weaknesses in the current version of the glossary.

Principle Investigator: Prof. Dr Marina Boccardi
Start of the study: 2023

Study coordination / Project management

DZNE Rostock/Greifswald
Nektarios Liaskos

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