FTD Disorders Registry

The FTD Disorders Registry (FTDDR) is designed to bring together the frontotemporal degeneration (FTD) community. It is for FTD diagnosed persons, their caregivers and family members. We work together to increase knowledge, raise awareness, and accelerate curative research for frontotemporal degeneration disorders (bvFTD, PPA, PSP, CBD, and FTD-ALS).

FTDDR is both a Contact Registry and a Research Registry. As a Contact Registry persons affected by FTD can join and receive emails about FTD, including newsletters, important research updates, and study opportunities. 

As a Research Registry, persons diagnosed, their caregivers, family members, and friends can provide their unique perspective to help us learn more about FTD. The Registry collects information from participants who describe their entire range of experiences that result from a diagnosis of FTD. The data is kept confidential, and when used for research is de-identified so persons cannot be identified.