EPND has launched a new Lay Glossary to make the language of neurodegenerative disease research easier to understand. Developed over three years, the resource brings together accessible explanations of terms spanning neurodegenerative diseases, research, ethics, data sharing and protection, diversity and inclusion, and artificial intelligence.

Research has its own specialised vocabulary, and unfamiliar terminology can make it harder to understand research information or discussions about the use and sharing of health data and biosamples. EPND's Lay Glossary, launched on the occasion of World Alzheimer's Month, is aimed primarily at lay people, including people affected by neurodegenerative diseases and members of the wider public, who may not have specialist research experience.

Importantly, the glossary was developed with people with lived experience. Alzheimer Europe and other EPND partners worked closely with the EPND Patient Expert Group (PEG), bringing together people with dementia and carers/supporters through Alzheimer Europe’s European working groups, alongside people with Parkinson’s disease and parkinsonism from the Federacion Espanola de Parkinson's Spanish Parkinson’s Advisory Group. Researchers from across EPND also contributed their expertise.

Through consultations and written feedback, PEG members reviewed definitions and advised on the glossary’s structure, navigation, accessibility and user-friendliness. Pilot online versions were also tested with people with dementia and carers/supporters, helping to refine the presentation and functionality.

The result aims to balance accessible language with enough detail to give users a useful basic understanding of unfamiliar terms. It can support people considering taking part in research or sharing their data and samples, as well as anyone seeking to better understand neurodegeneration research.

Gerda van Tongerloo is a passionate dementia advocate and Vice Chair of the European Working Group of People with Dementia. Diagnosed with vascular cognitive impairment around nine years ago, she combines her lived experience with extensive advocacy and research involvement. She believes that the lived experience is crucial for research and the active participation of people with neurodegenerative diseases can broaden the perspective of professional researchers. Gerda says: "I hope the lay glossary will help to better understand the challenges and limitations people with neurodegenerative diseases face."

The glossary will remain a living resource, to ensure it benefits as many people as possible. We welcome suggestions for new terms, clearer definitions or improvements to its functionality. Members of the public are specifically encouraged to propose additions or changes, and volunteers from Alzheimer Europe’s working groups will continue to contribute to revisions.

To share feedback, please contact Dianne Gove at dianne.gove@alzheimer-europe.org.

Explore the Lay Glossary: https://epnd.org/lay-glossary-1