Registro de trastornos FTD
El Registro de trastornos FTD is a powerful tool in the movement to discover treatments and a cure for FTD. It connects participants with research opportunities and empowers them to play an active role in advancing FTD care and science. Numbers have power, and together we demonstrate that our community is research ready and driving progress forward.
What is the FTD Disorders Registry?
The FTD Disorders Registry is a secure, online research platform that connects the FTD community with updates about research and opportunities to participate in studies. By joining, participants stay informed about new and ongoing research while contributing information that helps scientists better understand FTD.
Eligible participants may also choose to enroll in the Registry Research Study, a separate opportunity to share additional information that supports research efforts. For what is still a far-too-little-known disease like FTD, it is critically important to have a single repository that collects information from as many people as possible to help move research forward.
¿Quién puede registrarse?
AFTD encourages everyone impacted by FTD to join the Registry including people diagnosed with FTD, current and former care partners, family members, healthcare professionals, researchers, supportive friends, and legally authorized representatives. It is open to participants worldwide.
To be eligible to also participate the Registry Research Study, you must be a person diagnosed with FTD, a current or former care partner, a biological family member, or a legally authorized representative. The Registry Research Study is open to residents of the U.S. or Canada, 18 years of age or older (19 in those states and provinces where the age of majority is 19).
Everyone who joins the Registry will have access to the Registry dashboard and will receive periodic news and FTD research updates by email.
Participants who choose to take part in the Registry Research Study also receive notifications about survey opportunities and can share information about their lived experience from the comfort of home. They may also choose to strengthen their contribution by securely linking electronic medical records or uploading genetic test results or autopsy reports. All data shared with researchers is deidentified to protect your privacy. Personal information is protected and never shared.
Video: An Introduction to the FTD Disorders Registry
This helpful video provides a brief overview of the FTD Disorders Registry, its features, and how you can participate in FTD research.
