Research studies

Research Studies

We run two main studies for people and families affected by FTD at the Dementia Research Centre at UCL.

  • The Genetic FTD Initiative (GENFI) study is aimed at people with one of the genetic forms of FTD and their first-degree relatives.
  • The Longitudinal Investigation of FTD (LIFTD) study is aimed at people with the non-genetic (or sporadic) forms of FTD, including people with behavioural variant FTD and all of the PPA variants.

These studies involve a 1 or 2 day trip to visit us and undergo a number of tests including:

  • a clinical examination
  • psychology tasks of language, memory and thinking
  • magnetic resonance imaging of the brain
  • blood sampling
  • spinal fluid sampling

We also ask some people to undergo retinal imaging and for others to come for a PET scan. During the visit there is also an opportunity to meet with the team and discuss any ongoing issues.

We are also involved in two other studies at UCL of associated disorders:

  • The PSP CBS MSA (PROSPECT) study which is recruiting people with progressive supranuclear palsy and corticobasal syndrome.
  • The Cognition And Behaviour In ALS (CABIA) study which is recruiting people with motor neurone disease.

If you are interested in being part of any of these studies, please contact the GENFI/LIFTD Study Co-ordinator Annabel Nelson at

In the US, the FTD Disorders Registry has a list of current research studies that are recruiting.