We will endeavour to keep you posted with regular research news and opportunities to participate.

The FTD Disorders Registry

The FTD Disorders Registry (FTDDR) is designed to bring together the frontotemporal degeneration (FTD) community – people affected personally as well as those involved professionally. The goal is to work together to bring treatments and cures to this spectrum of disorders included under the umbrella of FTD: bvFTD, PPA, PSP, CBD and FTD-ALS.

The FTDDR is both a Contact Registry and a Research Registry: 

  • As a Contact Registry persons affected by FTD, their caregivers, family members, and friends can join and receive emails about FTD including important research updates and study opportunities. Contact Registry enrollment is open to the international community.
  • At present, the Research Registry is only open to people in the US or Canada – the ultimate plan is to roll this out internationally in the future.

The AFTDA supports this registry and encourages everyone involved in any way with FTD to find out more about joining this registry by visiting the registry website here or by catching the latest news on their Facebook page here. All participation is valuable, even participation from people who have already lost a loved one to FTD. Your experience can teach us a lot. 

"Join the Registry. Share your story. Advance the science" 

Sydney's FRONTIER research group: ongoing research opportunities

FRONTIER was the first research group dedicated to FTD in Australia. It was founded in November 2007 under the leadership of Professor John Hodges. Visit this site to find out more about getting involved in research, with opportunities for people who have frontotemporal dementia, their carers, or healthy volunteers.

Researchers interested in advertising their research through our site can contact us.