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Public Involvement
Public Involvement in dementia research means partnering with those affected to shape and improve the research process.
We implement a novel robust two-stage strategy for biomarker and AI algorithm validation, where phase I validates biomarkers and algorithms on a cohort of genetic and autopsied cases and phase II assesses biomarker value for diagnosis of sporadic FTD and at-risk pre-symptomatic mutation carriers.
We combine 11 geographically diverse cohorts of sporadic and familial FTD with retrospective and prospective longitudinal liquid biopsy samples and extensive clinical and behavioural data.
We are the first to use multimodal clinical and liquid biomarker data to train an AI-algorithm as a diagnostic tool for quick and early clinical FTD diagnosis.
If you want to learn more about PI and how it can contribute to dementia research, please have a look at:
How to contribute
Alzheimer Europe's Position
Frontiers | Keeping Track
Frontiers | Informed Consent
Public Involvement (PI) is the process of involving members of the public (e.g., people living with dementia, their family/ trusted friends, carers/ supporters and the general public) to varying degrees in dementia research in a meaningful, timely and active manner.
Public Involvement does not consist of raising awareness or providing information about completed or ongoing research or about being a research participant. It is about creating a partnership between researchers and the people affected by the condition under study, where all contribute towards the research process and output in varying degrees.
Public Involvement is based on the right of people living with a condition to have a say in the research that directly affects them. People with a neurodegenerative disease leading to dementia can actively and meaningfully contribute towards several aspects of the research process by bringing their lived experiences, perspectives and priorities, from which researchers can benefit too.
PREDICTFTD has set up, at the beginning of 2025, a Public Involvement Board (namely the PREDICTFTD-PIB) composed of four people with Frontotemporal dementia (FTD) and three people who provide/have provided care or support for someone with FTD. Members of the PREDICTFTD-PIB do not have any previous scientific, technical, or specialised knowledge.
The working language is English, and during the activities organised with the PREDICTFTD-PIB, members can be supported by a family member, a trusted friend, a carer or a supporter whenever needed. All the members of the PREDICTFTD-PIB will be involved in a timely and meaningful manner throughout the project lifecycle.
Public Involvement activities are coordinated by Alzheimer Europe, in partnership with all the project partners leading the different areas of research in the project.
How to contribute
If you want to learn more
about PI and how it contributes
to dementia research
Frontiers | Informed Consent
Frontiers | Keeping Track
Alzheimer Europe's Position
Public Involvement (PI) is the process of involving members of the public (e.g., people living with dementia, their family/ trusted friends, carers/ supporters and the general public) to varying degrees in dementia research in a meaningful, timely and active manner.
Public Involvement does not consist of raising awareness or providing information about completed or ongoing research or about being a research participant. It is about creating a partnership between researchers and the people affected by the condition under study, where all contribute towards the research process and output in varying degrees.
Public Involvement is based on the right of people living with a condition to have a say in the research that directly affects them. People with a neurodegenerative disease leading to dementia can actively and meaningfully contribute towards several aspects of the research process by bringing their lived experiences, perspectives and priorities, from which researchers can benefit too.
PREDICTFTD has set up, at the beginning of 2025, a Public Involvement Board (namely the PREDICTFTD-PIB) composed of four people with Frontotemporal dementia (FTD) and three people who provide/have provided care or support for someone with FTD. Members of the PREDICTFTD-PIB do not have any previous scientific, technical, or specialised knowledge.
The working language is English, and during the activities organised with the PREDICTFTD-PIB, members can be supported by a family member, a trusted friend, a carer or a supporter whenever needed. All the members of the PREDICTFTD-PIB will be involved in a timely and meaningful manner throughout the project lifecycle.
Public Involvement activities are coordinated by Alzheimer Europe, in partnership with all the project partners leading the different areas of research in the project.
Impact
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With 12,000 new cases yearly, income loss savings could reach €900M/year.
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Early, accurate diagnosis cuts costs by avoiding misdiagnosis and ineffective treatments.
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Better use of healthcare resources and team coordination. Enables spin-offs and value-based care models across the EU.
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