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.
CONTACT OR RESEARCH
The FTDDR is both a Contact Registry and a Research Registry. It’s easy to join. Just create a password-protected account, provide basic demographic information, and select either Contact or Research. Everyone’s participation is valuable! (See eligibility chart)
Contact Registry
By joining the Contact Registry, your data will be combined anonymously with others to report on this disease and provide researchers with valuable insights. You also will receive informational updates, including news and general research updates. Contact Registry is open to international enrollment for persons 18* or older.
Research Registry
The Research Registry offers the same benefits as the Contact Registry and more. You can complete Registry surveys and receive emails specifically about PSP or CBD and studies that may interest you.
- Research Registry enrollment requires a person to be at least 18* years old 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
Learn more about the FTD Disorders Registry
Your privacy is important to us! We will assign you a unique identification code to protect your privacy. (Read our Privacy Policy)
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.