From Surveys to Science: How Registry Data Becomes Research

Every advance in FTD research starts with information – real lived experience shared by the people and families who know these disorders best. The FTD Disorders Registry was created to collect those lived experiences and make them available to researchers. One of the most powerful ways Registry participants can contribute is by joining the Registry Research Study, where participants complete surveys that turn lived experiences into data researchers can use.

Who Can Join the Registry Research Study?

The Registry Research Study is open to:

• People diagnosed with FTD disorders
• Current and former care partners of someone with FTD disorders
• Family members of individuals diagnosed with FTD disorders

By sharing your experiences through surveys, you provide information that helps researchers better understand the realities of FTD disorders and design studies that reflect what matters most to families.

How Your Surveys Become Science

Step 1: Collecting the Data

Participants in the Registry Research Study complete surveys that capture valuable information about their experiences with FTD disorders, including symptoms, care needs, quality of life, and more. Participants can also upload genetic testing results and link their medical records. Each response is stored in our secure database. Numbers have power: the more people who take part, the stronger and more representative the data becomes.

Step 2: Protecting Privacy

Before data is ever shared with researchers, it is de-identified. This means that personal information such as your name, contact details, and any factors that could reveal your identity are removed. Researchers see only grouped, anonymous data, protecting your privacy while ensuring your experiences are heard.

Step 3: Researchers Request Data

Academic teams, clinicians, and industry scientists who are studying FTD disorders can request access to Registry data. Each request is carefully reviewed to make sure it aligns with the Registry’s mission: to accelerate research and improve the lives of people affected by these disorders.

Step 4: Turning Data Into Discovery

Once approved, researchers use Registry data to design clinical trials, develop new tools, or answer scientific questions. For example, Registry survey results have informed studies on diagnostic challenges, care partner burden, and the kinds of changes in daily life that matter most to families.

Step 5: Sharing Results Back

The Registry doesn’t stop at sending data out. It also brings knowledge back to the community. When possible, we share research findings through newsletters, webinars, scientific abstracts, and conference updates, so participants can see the impact of their contributions.

Why It Matters

Each survey response is more than just a data point. It’s a piece of the larger story of FTD disorders. By combining many voices, the Registry Research Study creates a powerful resource that researchers can use to unlock insights and bring us closer to treatments.

When you participate, you are not just filling out forms. You are fueling science and getting us closer to a cure.