When you enroll in the FTD Disorders Registry (FTDDR), you join with others to advance the science, find treatments, and work towards a cure for these life-altering diseases. We encourage persons diagnosed, family members, current or former caregivers, and friends to help change the course of this disease.
FTD is devastating, but there is hope. By participating in the Registry, you become a citizen scientist working with other scientists to drive new research. Your story holds the promise of healing for you and others. We can translate each person’s journey with FTD into a powerful tool to change the way clinical trials are run, and to help answer key questions about each disorder. 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 aphasias (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.
The FTDDR is both a Contact Registry and a Research Registry. It’s easy to join. Just create a password-protected account and provide basic demographic information. Everyone’s participation is valuable! (See eligibility chart)
Contact Registry — By joining the Contact Registry, you will receive informational updates about FTD and the Registry, including news and general research updates. Contact Registry is open to international enrollment for persons 18 years old or older.
Research Registry — By joining the Research Registry, you will sign an informed consent form and complete surveys to provide your unique perspective. These surveys help researchers better understand FTD. 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 Registry participants are automatically enrolled in the Contact Registry and receive email updates about FTD and the Registry.
*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 Registry research, 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 by being yourself and willing to volunteer.
The FTD Disorders Registry is a powerful tool in the movement for treatments and a cure.