Frontotemporal dementia

This page provides information on frontotemporal dementia for which most of it has been endorsed by ERN-RND members. It is structured as follows:

  • Definition
  • ERN-RND centres
  • Diagnosis
  • Care standards
  • Clinical studies & trials
  • Registries
  • Patient organisations
  • Study groups & networks
  • Useful links, training resources, evidence and publications
  • CPMS use case


According to Dr Jonathan Rohrer & Dr Jason Warren from the Dementia Research Centre of the University College London, Institute of Neurology, "FTD is a group of conditions caused by loss of cells mainly in the frontal and temporal lobes of the brain. The main symptoms are a progressive change in personality and behaviour or progressive deterioriation in language abilities." Please find more information on rare dementia support's website.

ERN-RND centres

We provide the list of frontotemporal dementia centres, members of ERN-RND, as well as the contact details of medical experts.

See all centres.


  • ERN-RND approved diagnostic flowcharts

Care Standards

  • ERN-RND recommended disease rating scales
  • ERN-RND endorsed guidelines


Clinical studies & Trials

  • Clinical trials at ERN-RND centres
  • International clinical studies & trials


  • Registries to which ERN-RND members contribute
  • Other registries

Patient organisations

Patient organisations are non-profit organisations which are patient-focused where patients and/or carers represent a majority of members in governing bodies (European Medicines Agency, 2014). Herewith, we provide a list of national and European patient organisations that work in the disease area that is covered by ERN-RND.

Study groups & networks

The listed study groups and disease networks are external networks and groups, which are leaders in the field of research for these disease groups. ERN-RND’s work is based on and complimentary to the work being done by these networks.

Useful links, training resources, evidence and publications

CPMS use case

We organise e-case meetings on frontotemporal dementia in order to discuss FTD cases with unclear significance after WGS.

Find out more about the CPMS here