Why join

Numbers have power. When you enroll in the FTD Disorders Registry (Registry), you join with others to advance the science, find treatments, and work towards a cure for these life-altering disorders. We encourage anyone with a connection to FTD disorders and an interest in research to join the Registry and help change the course of these disorders.

FTD disorders are devastating, but there is hope. By participating in the Registry, you become part of a movement working with scientists to drive new research. By sharing your lived experience with FTD disorders, you help answer key questions about each disorder and create a powerful tool to change the way clinical trials are run. Together, we can make a difference.

If you or your family is impacted by any of the FTD disorders – behavioral variant FTD (bvFTD), primary progressive aphasia (PPA), progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), or FTD with motor neuron disease (also called FTD-ALS) – your story can help advance the science now, and for generations to come.

Join the Registry

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.

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YOUR DASHBOARD

Everyone who joins the Registry is provided with a personalized dashboard that connects them with FTD disorders resources, information, and external research opportunities tailored to your interests.

Being a member of the Registry means you will receive updates on new clinical trials and research opportunities that you or someone you know may be eligible to participate in.

Eligible participants are also invited to join the FTD Disorders Registry Research Study to share their lived experience directly with interested researchers. Your level of participation in research is always optional. Information collected through the Registry is de-identified so your personal data and privacy are protected.

THE REGISTRY RESEARCH STUDY

By joining the Registry Research Study, you will sign an informed consent form and complete surveys to provide your unique perspective. These surveys help researchers better understand FTD disorders. We will assign you a unique identification code to protect your privacy.

Research Registry enrollment requires a person to be at least 18 years of age and a resident of the United States or Canada.*
Research registrants must be able to actively participate in answering survey questions, even with the help of a care partner.
• Research participants must be diagnosed with an FTD disorder, a biological family member of a person diagnosed with an FTD disorder, or a past or present caregiver for a person diagnosed with an FTD disorder.

*19 years in those states or provinces where the age of majority is 19; Alberta, Saskatchewan, and Newfoundland and Labrador currently excluded

In addition to persons diagnosed with FTD, we invite caregivers, family members, and friends to join the Registry and share your FTD story.

HOW YOU HELP BY JOINING

By participating in the Registry Research Study, you will help us all learn more about FTD disorders. Completing research surveys provides your unique perspective. This increased understanding helps drive research and facilitate clinical trials.

Whether participating in surveys, a research study, or a clinical trial, your input is valuable. You can support FTD research just be being yourself and willing to volunteer.

The FTD Disorders Registry is a powerful tool in the movement for treatment and a cure.

Join the Registry Today!

Numbers have power. Join the Registry. Advance the science.

FEATURED STUDY

CONNECT2CAREGIVERS

This 15-month remote study will help researchers determine whether caregivers of persons with dementia, including FTD, would find a technology-based matching program valuable for locating another caregiver for peer-to-peer support. Additionally to determine if algorithmic matches are more beneficial than random ones. Must be at least 18 years old, have access to the internet, and be a current or former caregiver who has been in the role of providing care for someone with dementia for at least 3 months.

For more information, visit the study listing on ClinicalTrials.gov.

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.