THE FTD REGISTRY FOR PSP & CBD

When families affected by progressive supranuclear palsy (PSP) or corticobasal degeneration (CBD) enroll in the FTD Disorders Registry, they join with others to work towards a cure for these life-­altering diseases.

WHY PSP AND CBD?

FTD is not a single disease, but a group of diseases affecting the frontal and temporal lobes of the brain. The most common and best-known of these is behavioral-variant frontotemporal dementia (bvFTD), but there are several others, including PSP and CBD.

In addition to affecting the frontal and temporal lobes, PSP and CBD involve critical areas of the basal ganglia where voluntary movements are regulated. This produces a resemblance to Parkinson’s disease, which is rare and mild in the other types of FTD.

Another key difference between PSP/CBD and other FTDs is the involvement of the brainstem, producing difficulty with eye movements, speech, swallowing, and sleep.

HELP ADVANCE PSP AND CBD RESEARCH

The FTD Disorders Registry (FTDDR) is a secure electronic database that collects information from people diagnosed with any of the FTD disorders, including PSP and CBD, and from their caregivers and family members.

Input from Registry participants will lead to better understanding of the impact of these diseases on individuals and their families. It will also fuel future research, including studies by scientists.

ABOUT THE FTD DISORDERS REGISTRY

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 lived experience with FTD.
Join the Registry Now!

Join the Registry. Share your story. Advance the science.

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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