Our mission at the Registry is to facilitate research and accelerate the development of treatments by providing resources that:

• Promote & support research participation
• Enable access and sharing of data with researchers
• Amplify the voice of the patients’ and families’ lived experience

We support the spectrum of disorders that involve frontotemporal degeneration or FTD. Relevant clinical diagnoses include:

• Frontotemporal dementia
• behavioral variant FTD (bvFTD)
• primary progressive aphasia (PPA)
• progressive supranuclear palsy (PSP) or Richardson’s Syndrome
• corticobasal degeneration (CBD) / corticobasal syndrome (CBS)
• FTD with motor neuron disease (also called FTD-ALS)

The Registry provides a range of services.

Contact Registry — Everyone enrolled in the Registry has access to a private dashboard with information and a clinical research study list that can be filtered by interests. Participants can also receive communications such as newsletters or notifications about research studies recruiting for people that match their interests. Participation is open globally for persons 18 years old or older, including for friends and healthcare providers.

Research Study — The Registry also hosts an online research study to learn from people with lived experience with these disorders. People who are eligible and choose to participate will be invited to complete surveys, share medical records or genetic test results, and more. The data collected is stripped of identifying information (to maintain the privacy of participants) and then made available to researchers working towards solutions for people with these diseases. The online study is open to people:

• at least 18 years of age*
• who reside in the United States or Canada* (new geographic regions coming soon)
• who have direct lived experience with an FTD disorder as either a person diagnosed, a current or former caregiver, or a biological family member of someone who was diagnosed. A person-diagnosed can enroll themselves or be enrolled by their legally-authorized representative.
• able to actively participate in answering survey questions, even with the help of a care partner

*19 years in those states or provinces where the age of majority is 19

Other participation options: Some people are invited to participate in the Registry for specific purposes, such as to share insights on an enrolled person-diagnosed, or as part of their participation in a separate research study partnering with the Registry (e.g. the ALLFTD natural history study).

Participant privacy is a priority for our non-profit mission. Identifying information is never shared (See Privacy Policy and Personal Data Collection documents). Data collected and used for research purposes is de-identified to remove all personal information.