How to Find Clinical Trials for FTD

Finding a clinical trial for frontotemporal degeneration (FTD) can feel overwhelming. Because FTD is rare, studies are often limited, highly specific, and not always easy to find. But there are ways to stay informed, and one of the most effective is to start with the right tools.

Why Clinical Trials Matter in FTD

FTD research depends on participation. Because the condition is rare, many studies struggle to find enough participants, especially across different subtypes and genetic groups.

Clinical trials help:

• Advance potential treatments
• Improve understanding of FTD and how it progresses
• Test whether new approaches are safe and effective

Participation also signals something important. The FTD community is present, engaged, and research-ready.

Start with a Research Registry

One of the most effective ways to learn about clinical trials is to join the FTD Disorders Registry.

The Registry connects individuals and families impacted by FTD with research opportunities. By joining:

• You receive notifications about studies that may be relevant to you
• You stay informed about new and emerging research
• You help researchers better understand the FTD community, including representation across subtypes and genetic groups

Because FTD is rare, researchers need to understand not just who is impacted, but whether there are enough potential participants across different groups to make studies possible. Registry participation helps demonstrate that.

Anyone can join the Registry to receive updates about research and education. Eligible participants may also have the option to take part in the Registry Research Study, sharing information about their lived experience so researchers can better understand FTD.

Privacy matters. Participant information is protected and shared with researchers only in a deidentified way.

Even if you are not actively looking for a clinical trial today, joining the Registry helps ensure you hear about opportunities as they become available.

Use ClinicalTrials.gov

Another important tool is ClinicalTrials.gov, a comprehensive database of clinical studies from around the world.

You can:

• Search for “frontotemporal dementia” or specific subtypes
• Filter by recruiting status such as recruiting or not yet recruiting
• View study locations, eligibility criteria, and contact information

ClinicalTrials.gov includes a wide range of studies, but it can feel technical and time-consuming to navigate.

How the Registry Helps Simplify the Search

While ClinicalTrials.gov is a valuable resource, the Registry helps make the process easier.

Instead of searching through listings and trying to determine fit on your own, the Registry:

• Shares relevant research opportunities directly with participants
• Helps surface studies that align with different FTD subtypes and experiences
• Keeps you informed as new opportunities open or expand

This means less time searching and more confidence that you are seeing opportunities that may be relevant to you.

Talk to Your Care Team

If you are interested in participating in research, your neurologist or care team may also be able to help identify clinical trials and determine whether a study is a good fit.

Stay Connected to Research

Clinical trials are constantly evolving. New studies open, eligibility criteria change, and opportunities expand over time.

Joining the Registry is one of the simplest ways to stay connected.

Because FTD is rare, every participant matters. When more people take part in research, it helps move science forward and brings us closer to better understanding and treating FTD.