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Join the FTD
Disorders Registry


Scientists are making real progress in our understanding of frontotemporal degeneration (FTD), and every person's story is vital. The FTD Disorders Registry invites people living with FTD, including caregivers, family, and friends, to join this critical movement toward a cure.


Join the Registry. Your story can help lead us to a cure.

Still trying to decide whether to join? Visit the WHY JOIN or ABOUT THE REGISTRY pages for more information.

 

The Registry for those affected by:

  • bvFTD
  • PPA
  • PSP
  • CBD
  • FTD-ALS

Joining the Registry is easy and should take less than 20 minutes.

 1. Create an account with your information:

All participants are asked to create a password-protected account by providing basic contact and demographic information. A list of all information being requested can be read here.

 2. Select which type of registry you want to join:

  • Contact Registry  Receive emails about FTD and the Registry, including news and general research updates.
  • Research Registry  In addition to receiving emails about FTD, registrants are sent study notices and can complete surveys to help researchers better understand FTD. Data from your surveys has all information that can identify you removed and is kept confidential. Note: To complete this registration, you will need to read and accept a two-part informed consent.

Still trying to decide whether to join? Visit the WHY JOIN or ABOUT THE REGISTRY pages for more information.