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About Us

The FTD Disorders Registry is a shared vision between The Association for Frontotemporal Degeneration (AFTD) and The Bluefield Project to Cure Frontotemporal Dementia. A diagnosis of FTD can be isolating, so the Registry is meant to be a resource for patients and families to appreciate their place within the broader FTD disorders community and also apply their unique experience to advance research efforts toward therapies and a cure.

Our goal is to provide a centralized registry across the frontotemporal disorders spectrum.

  • We will make de-identi­fied FTD Disorders Registry data available to diverse stakeholders to support health outcomes research.
  • We will also share other studies of interest to patient advocacy groups, scientists, and physicians.
  • As the FTD Disor­ders Registry grows, it will serve as a resource that will facilitate FTD clinical trial enrollment by providing high quality, aggregate data, and by mobilizing a national and eventually international base of potential research study volunteers.

The combined voices of our registrant volunteers will empower the FTD Disorders Registry to inform on more patient-friendly clinical trial design and to stimulate new conversations with regulatory and policy groups as they work towards patient-focused drug development.