NUMBERS HAVE POWER.
JOIN THE REGISTRY.
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.
WHAT IS THE FTD DISORDERS REGISTRY?
The Registry is an online database that collects information from those affected by all types of frontotemporal degeneration (FTD):
Persons diagnosed, current and former caregivers, family, and friends can join. As a member of the Registry, you can help us advance the science and move faster toward finding treatments and cures. The first step is simple:
NUMBERS HAVE POWER.
JOIN THE REGISTRY.
ADVANCE THE SCIENCE.
NUMBERS HAVE POWER.
JOIN THE REGISTRY.
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.
WHAT IS THE FTD DISORDERS REGISTRY?
The Registry is an online database that collects information from those affected by all types of frontotemporal degeneration (FTD):
Persons diagnosed, current and former caregivers, family, and friends can join. As a member of the Registry, you can help us advance the science and move faster toward finding treatments and cures. The first step is simple:
AND NOW WE WORK TOGETHER >
Will you join the community working to end FTD?
WHO CAN JOIN >
Anyone with a connection to FTD disorders and an interest in research is encouraged to join the Registry, including:
- people diagnosed with an FTD disorder
- biological family members
- spouses
- caregivers
- friends
- physicians
- and other healthcare professionals
UPDATES
Quick Question January 2025 Result: Which motivators would increase your likelihood to participate in clinical trials?
635 people answered our question
The top three answers were:
– Advancing research to benefit others at risk for impacted by FTD disorders (64%)
– Access to new treatments that aren’t available yet – (57.7%)
– Access to my study test results – (56.2%)
Research Highlight: Experiences with Comorbid FTD and ALS
The FTD Insights Survey is the largest community survey of people with lived experience of FTD disorders. This survey queried on topics that included the diagnostic journey, disease symptoms, and their impacts on daily life. Shana Dodge, PhD, AFTD’s Director of Research Engagement, used data from the FTD Insights Survey in a poster session at…
Quick Question December 2024 Result: What kind of non-medical interventions have made a positive difference for the person diagnosed with an FTD disorder?
500 people answered the FTD Disorders Registry’s December Quick Question about what type of non-medical interventions have made a positive difference for the person diagnosed with an FTD Disorder.
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Virtual Panel: Power in Numbers
Virtual Breakout Panel | Friday, May 3rd | 3:45 PM MT
Power in Numbers: How the FTD Disorders Registry Drives Groundbreaking Research
Quick Question March 2025 Result:
576 people answered the FTD Disorders Registry’s March Quick Question where we asked about what types of FTD-related research content respondents would find most valuable. The information will be used to help develop new content for our Registry dashboard, website, and printed materials.
Virtual Panel: Power in Numbers
Virtual Breakout Panel | Friday, May 3rd | 3:45 PM MT
Power in Numbers: How the FTD Disorders Registry Drives Groundbreaking Research
WAYS TO HELP
JOIN US TODAY
Be part of the community working to end FTD. Every voice counts.
PARTICIPATE IN RESEARCH
Support the science for an FTD cure. Sign up here.
SPREAD THE WORD
Invite family and friends to join the growing FTD Registry.
THE FTD REGISTRY IS A PARTNERSHIP OF:
