FTD Disorders Registry

What Is This Study About?

The Frontotemporal Degeneration (FTD) Disorders Registry is an online resource and database that securely collects information and stories from people affected by FTD to advance the science and development of FTD treatments. Anyone affected by FTD can join the registry, including people with an FTD diagnosis, as well as their family members, caregivers, and friends. After joining the registry, participants will receive emails about FTD including research updates and study opportunities.

Do I Qualify To Participate in This Study?

Must have:

Anyone affected by FTD, including:

• People diagnosed with any type of FTD, including but not limited to behavioral variant FTD, any one of the primary progressive aphasias, progressive supranuclear palsy, corticobasal degeneration, or FTD with motor neuron disease
• Current and former caregivers of a person living with FTD
• Family and friends of a person living with FTD

Must NOT have:

None listed

If I Qualify, Who Do I Contact?

Contact study personnel listed either under the general study contact or the location nearest you.

 

Who Is the General Study Contact?

For more information and to enroll, visit the FTD Registry website or email the FTD Disorders Registry.

Where Is This Study Located?

Pennsylvania
FTD Disorders Registry (National Enrollment Online) King of Prussia, PA 19406 Recruiting

Who Sponsors This Study?

Lead: Association for Frontotemporal Degeneration

Collaborator Sponsor

• Bluefield Project to Cure Frontotemporal Dementia