Frontotemporal dementia

More information about FTD and the research team can be found at www.ftdtalk.org.

The Genetic Frontotemporal dementia Initiative (GENFI)

The Genetic Frontotemporal dementia Initiative (GENFI) is a cohort study of familial FTD run from UCL by Professor Jonathan Rohrer.

GENFI is an international multicentre study in Europe and Canada investigating genetic forms of FTD. The aim is to develop markers that can be used in clinical trials to help know when we should be treating people, and how to know that the treatment is working.

People eligible to be in the study are those who are听symptomatic and those who are 鈥榓t-risk鈥� due to a first degree relative having a known genetic form of FTD.听For further details, please see听the听.

What does GENFI involve?

A research visit with us would last one or two days, once a year. The visit would include a medical assessment with a doctor, including blood and urine samples, and a lumbar puncture if you would be willing. During your visit you would also have around an hour of psychological听testing looking into your thinking and memory, as well as a 45-minute MRI scan. During the visits there is also an opportunity to meet with the team and discuss any ongoing issues.

No individual results will be disclosed to participants or relatives of participants who take part in the study unless there is an unexpected incidental finding relevant to your health. Results will be available at a group level once the study is completed. We then plan to publish the results of the study in scientific journals. Information that would identify you or any other participant will not be included in any publication.

You will not receive any payment for participating in this study. However, travel and/or hotel costs and the costs of meals/drinks during your visit will be reimbursed.听

Sophie Goldsmith is the UCL GENFI study coordinator. Please contact her at听genfi@ucl.ac.uk听if you are interested in knowing more about participating in the study.

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Longitudinal Investigation of FTD (LIFTD)听

The Longitudinal Investigation of FTD (LIFTD) study is a cohort study of sporadic (non-genetic) FTD.听

The study aims to听develop听markers that will help with early diagnosis of FTD and understand the progression of disease. It also aims to understand the complex symptoms of FTD and how these relate to changes in brain function听and structure. The study is recruiting people with听behavioural frontotemporal dementia and听primary progressive aphasia (the听language听form of FTD) as well as people who have motor symptoms such as parkinsonism听or motor neurone disease.听For more information, please visit the听LIFTD study page.听

What does LIFTD involve?

A research visit with us would last two to three days, once a year. The visit would include a medical assessment with a doctor, including blood and urine samples, and a lumbar puncture if you would be willing. During your visit you would also have around one to two hours of psychological听testing looking into your thinking and memory, as well as a 45-minute MRI scan. During the visits there is also an opportunity to meet with the team and discuss any ongoing issues.

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