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FTD Disorders Registry


The Frontotemporal Degeneration (FTD) Disorders Registry is an online resource and database to collect information from people affected by all types of FTD and help them find research studies related to FTD.

Minimum Age Maximum Age Gender Healthy Volunteers
18 NA All Yes

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

The FTD Disorder Registry was created to securely collect 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.

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

Association for Frontotemporal Degeneration

  • Bluefield Project to Cure Frontotemporal Dementia

Name Phone Email
Dianna K. H. Wheaton, M.S., Ph.D., CHES 888-840-9980