The FTD Disorders Registry: A Vital Resource for Patients, Families, and Researchers
For anyone affected by frontotemporal degeneration (FTD), including frontotemporal dementia (FTD), behavioral variant FTD (bvFTD), primary progressive aphasia (PPA), progressive supranuclear palsy (PSP), corticobasal degeneration (CBD/CBS), or FTD with motor neuron disease (FTD-ALS) finding reliable information and support can be challenging. That’s why the FTD Disorders Registry stands out as a key resource for patients, caregivers, family members, and the medical and research community.
Connecting the FTD Community
The Registry is a nonprofit organization dedicated to accelerating research and improving treatments for FTD. By bringing together those diagnosed, their families, caregivers, clinicians, scientists, and advocacy organizations, it creates a collaborative environment that supports both research and community.
Participants in the Registry gain access to:
A private dashboard with tailored information and a curated list of clinical research studies.
Regular updates, newsletters, and notifications about studies relevant to their interests.
Opportunities to contribute to research through surveys, medical records, and genetic data, all kept confidential and de-identified to protect privacy.
Who Can Participate?
The Registry welcomes adults aged 18 and older (or 19 in certain regions) who have a direct connection to FTD, whether as someone diagnosed, a caregiver, or a biological family member. Healthcare providers and friends of those affected are also encouraged to enroll, helping to share resources and expand awareness.
Supporting Research and Advocacy
The FTD Disorders Registry is more than a database, it’s a platform for meaningful research collaboration. By providing anonymized data to researchers, it helps guide patient-centered clinical trial design, informs drug development, and amplifies the voices of those living with FTD. The Registry also partners with other studies, creating even more opportunities for participants to contribute.
How to Get Involved
For patients, caregivers, and family members, joining the Registry provides a way to connect, contribute, and help advance FTD research. Healthcare providers can help share these resources with families, and researchers can access valuable, de-identified data to accelerate progress toward treatments. While the organization is located in the United States, Canadians can connect with them to learn more.
To learn more visit FTDRegistry.org
