FTD Disorders Registry LLC

The FTD Disorders Registry is an online database to collect information from those affected by all types of frontotemporal degeneration (FTD): behavioral variant FTD (bvFTD), any one of the primary progressive aphasias (PPA), progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), or FTD with motor neuron disease (also called FTD-ALS). The FTD Disorders Registry (FTDDR) is designed to bring together the frontotemporal degeneration community, this means persons diagnosed, their family members, caregivers, and friends as well as clinicians, scientists, and industry. Our goal is to work together to bring treatments and cures to this spectrum of disorders. 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 US and international community. As a Research Registry, persons diagnosed, their caregivers, family members, and friends can provide their unique perspective to help us learn more about FTD. Research Registry enrollment requires an individual to be at least 18 years of age and a resident of the US or Canada (19 years in those states or provinces where the age of majority is 19; Alberta, Saskatchewan, Newfoundland and Labrador currently excluded).