The Road Ahead: How Registry Data Can Drive Breakthroughs

Progress in understanding and treating frontotemporal degeneration (FTD) depends on one essential ingredient: data. Every person living with FTD, every caregiver, and every family member carries a piece of the puzzle. When those pieces are brought together through the FTD Disorders Registry Research Study, they form a powerful picture that researchers can use to drive discovery and innovation.

Why Data Matters

Data tells a story that individual experiences alone cannot. It reveals patterns like when symptoms first appear, how long it takes to receive a diagnosis, which treatments and supports people are using, and where gaps exist. This information helps researchers focus on the most urgent questions and design studies that address real-world needs.

For example, Registry data has already shown that people with FTD often face long diagnostic delays and experience major financial and emotional impacts. Insights like these are essential to improving the journey for those who will face FTD in the future.

Fueling Research Breakthroughs

Registry data doesn’t sit on a shelf. It is actively shared with scientists, clinicians, and drug developers working to develop new therapies and interventions. By analyzing de-identified data from a large community, researchers can:

• Identify trends that might not be visible in smaller studies
• Understand the diversity of FTD’s impact across ages, genetic backgrounds, and regions
• Accelerate clinical trial design by showing where participants are located and what symptoms they experience
• Shape better care guidelines based on what families report as most helpful or most challenging

We have seen what is possible in other neurodegenerative diseases. Recently, new treatments have been shown to slow the progression of Alzheimer’s disease, and the first gene therapy for Huntington’s disease demonstrated a meaningful slowing of symptoms. These advances remind us that progress is possible, and that data is often the key that unlocks it.

The Power of Participation

Every new Registry Research Study participant expands the reach and impact of this resource. When more people join, the data becomes more robust and representative. This means researchers can ask better questions and uncover answers faster.

Participation is simple: eligible Registry Participants can join the Registry Research Study,  complete surveys about your experience, and keep your information up to date right in your Registry dashboard.

Even if you choose not to join the Registry Research Study, simply being part of the Registry ensures you will be notified about clinical trials and other research opportunities that may be a good fit for you or your family.

Looking Ahead

The road ahead is filled with possibility. Researchers are exploring promising biomarkers, innovative imaging techniques, and targeted therapies. Registry data is helping to guide them every step of the way.

Together, we can transform the landscape of FTD research. By contributing your lived experience, you become part of a movement to bring hope, progress, and breakthroughs to families impacted by FTD.