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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?

Minimum Age: 18

Maximum Age: NA

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


Who Is the General Study Contact?

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

Study Contact
Dianna K. H. Wheaton, M.S., Ph.D., CHES

Need Help?

Contact NIA’s Alzheimer’s and related Dementias Education and Referral (ADEAR) Center at 800-438-4380 or email ADEAR.

Where Is This Study Located?

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

Who Sponsors This Study?

Lead: Association for Frontotemporal Degeneration

Collaborator Sponsor

  • Bluefield Project to Cure Frontotemporal Dementia