Together we can find a cure for ftd

The FTD Disorders Registry is a powerful tool in the movement to create therapies and find a cure. Together we can help change the course of the disease and put an end to FTD.

Your privacy is important! We promise to protect it. We will not share your contact information.

Read Full Privacy Statement

WHAT IS THE FTD DISORDERS REGISTRY?

The Registry is an online database that collects information from those affected by all types of frontotemporal degeneration (FTD):

  • behavioral variant FTD (bvFTD)
  • primary progressive aphasias (PPA)
  • progressive supranuclear palsy (PSP)
  • corticobasal degeneration (CBD)
  • FTD with motor neuron disease (also called FTD-ALS)

Persons diagnosed, current and former caregivers, family, and friends can join. As a member of the Registry, you can help us advance the science and move faster toward finding treatments and cures. The first step is simple:

Together we can find a cure for ftd

The FTD Disorders Registry is a powerful tool in the movement to create therapies and find a cure. Together we can help change the course of the disease and put an end to FTD.

Your privacy is important! We promise to protect it. We will not share your contact information.

Read Full Privacy Statement

WHAT IS THE FTD DISORDERS REGISTRY?

The Registry is an online database that collects information from those affected by all types of frontotemporal degeneration (FTD):

  • behavioral variant FTD (bvFTD)
  • primary progressive aphasias (PPA)
  • progressive supranuclear palsy (PSP)
  • corticobasal degeneration (CBD)
  • FTD with motor neuron disease (also called FTD-ALS)

Persons diagnosed, current and former caregivers, family, and friends can join. As a member of the Registry, you can help us advance the science and move faster toward finding treatments and cures. The first step is simple:

AND NOW WE WORK TOGETHER >

Will you join the community working to end FTD?

WHO CAN JOIN >

Anyone with a connection to FTD disorders and an interest in research is encouraged to join the Registry, including:

  • people diagnosed with an FTD disorder
  • biological family members
  • spouses
  • caregivers
  • friends
  • physicians
  • and other healthcare professionals

UPDATES

Quick Question August 2026 Result:

In our August Quick Question, we asked Registry participants, “Have you experienced any safety concerns related to FTD in the past year?” A total of 516 people responded, offering a snapshot …

more > about Quick Question August 2026 Result:

Understanding the Different Ways to Participate in FTD Research

There are many ways to participate in research. Learn the different options to choose what is best for you and your family.

more > about Understanding the Different Ways to Participate in FTD Research

A New Approach to PSP Research: Understanding the PSP Trial Platform

The PSP Trial Platform is using an innovative approach to study multiple potential treatments within one shared clinical trial framework. Learn how this new model could help advance PSP research and make clinical trials more efficient.

more > about A New Approach to PSP Research: Understanding the PSP Trial Platform

Quick Question August 2026 Result:

In our August Quick Question, we asked Registry participants, “Have you experienced any safety concerns related to FTD in the past year?” A total of 516 people responded, offering a snapshot …

more > about Quick Question August 2026 Result:

Understanding the Different Ways to Participate in FTD Research

There are many ways to participate in research. Learn the different options to choose what is best for you and your family.

more > about Understanding the Different Ways to Participate in FTD Research

Quick Question August 2026 Result:

In our August Quick Question, we asked Registry participants, “Have you experienced any safety concerns related to FTD in the past year?” A total of 516 people responded, offering a snapshot …

more > about Quick Question August 2026 Result:

WAYS TO HELP

JOIN US TODAY

Be part of the community working to end FTD. Every voice counts.

PARTICIPATE IN RESEARCH

Support the science for an FTD cure. Sign up here.

SPREAD THE WORD

Invite family and friends to join the growing FTD Registry.

THE FTD REGISTRY IS A PARTNERSHIP OF:

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