FTD Disorders Registry

The FTD Disorders Registry is a powerful tool in the movement to discover treatments and a cure for FTD. It relies on the stories of persons diagnosed with FTD, caregivers (both current and former), family members and friends. The collected stories and experiences of the FTD community will help to spur innovation that will lead to effective treatments and therapies.

AFTD and the Bluefield Project to Cure Frontotemporal Dementia co-founded the Registry with generous support from the Rainwater Charitable Foundation’s Tau Consortium program.

What is the FTD Disorders Registry and why is it important?

The FTD Disorders Registry is a secure electronic database that collects information from people diagnosed with any of the FTD disorders, (including PSP) and from their caregivers and family members. Input from Registry participants will lead to better understanding of the impact of the disease on individuals and their families. It will also fuel future research, including studies by scientists to learn more about the natural history of FTD. For what is still a far-too-little-known disease like FTD, it is critically important to have a single repository that collects information from as many people as possible.

Who can sign up?

AFTD encourages everyone affected by FTD – whether you are living with FTD yourself or you are providing care to a loved one with the disease – to register.

To participate in research through the Registry, you must be a resident of the U.S. or Canada and 18 years of age (19 in those states and provinces where the age of majority is 19; Alberta, Saskatchewan, and Newfoundland and Labrador currently excluded).

All who join will receive periodic news and FTD research updates by email. Those who sign up to participate in research will receive notifications to participate in surveys.

For more information, visit the FTD Disorders Registry home page.

Video: The FTD Disorders Registry and How It Can Advance Research

This webinar explains how participating in the FTD Disorders Registry can drive research.