Accelerating FTD Research: How the Registry Supports Study Recruitment

Recruiting participants for research studies is one of the biggest challenges in advancing science, especially in rare and complex disorders like frontotemporal degeneration (FTD). The FTD Disorders Registry was created to help overcome this by connecting researchers with individuals who are willing to be part of the research process.

Whether you are a researcher launching a new study or a participant hoping to make a difference, the Registry is designed to bring the right people together.

For Researchers: Streamlined, Targeted Recruitment

Finding eligible participants for studies related to FTD disorders, ALS, and other related neurological conditions can be difficult, time-consuming, and costly. The Registry helps researchers reach a community of individuals who have already indicated an interest in research participation and who have provided detailed information about their diagnosis, symptoms, family history, and more.

When a study is approved for recruitment through the Registry, our team reviews its criteria and identifies potential matches within the Registry. We then send tailored communications to individuals who meet the study’s requirements, inviting them to learn more and connect directly with the research team.

This approach protects participant privacy while allowing researchers to:

• Accelerate recruitment timelines
• Reduce outreach costs and administrative burden
• Connect with a motivated, informed group of potential participants
• Focus more time on the research itself

If you are a researcher seeking recruitment support, visit our Researcher Page to learn how the Registry can help amplify your reach.

For Participants: A Direct Way to Support Research

By joining the Registry, individuals can play an active role in advancing FTD disorders research. Everyone who enrolls in the Registry receives study recruitment emails tailored to their interests and communication preferences. When a new research opportunity becomes available, Registry participants who may be a good match are notified by email with study details and instructions on how to learn more or connect directly with the research team.

In addition to receiving study invitations, eligible participants also have the option to enroll in the Registry Research Study. This involves completing confidential surveys about diagnosis, symptoms, family history, and other relevant lived experiences. Participants in the Registry Research Study may also be invited to share additional information over time, helping researchers better understand the lived experience of FTD disorders.

Participation in any research opportunity is always voluntary. Whether you are answering a survey, joining a clinical trial, or simply staying informed, every action helps move research forward.

Through the Registry, participants can:

• Be notified about studies that may be relevant to them
• Contribute to a growing body of knowledge about FTD disorders
• Help researchers design better, more focused studies
• Stay engaged with research progress and opportunities

Even if you are not eligible for a specific study today, your presence in the Registry still makes an important impact. Numbers have power.

Driving Progress Together

The FTD Disorders Registry plays a critical role in bridging the gap between researchers and participants. With each new study and each new participant, we move closer to better understanding, treating, and eventually curing FTD disorders.

Whether you are designing a study or hoping to contribute to one, the Registry is here to help make those connections.

Researchers: Request Recruitment Support
Participants: Learn More and Join the Registry

Together, we can accelerate the pace of discovery and bring hope to everyone impacted by FTD disorders.