What Makes a Registry “Research Ready”?

You may hear the phrase research ready when people talk about the FTD Disorders Registry. It can sound technical, but the idea behind it is actually very simple.

FTD is a rare disease, and that makes research especially challenging. Researchers often struggle to recruit enough people to confidently launch studies, test ideas, or move potential treatments forward.

A research ready registry is one that truly works for the community and helps researchers learn what they need to move FTD research forward.

Here is what that looks like in everyday terms.

It Includes the People Who Are Living With FTD

A research ready registry reflects the real FTD community. That means people living with FTD, care partners, family members, and legally authorized representatives.

Including people across different diagnoses, stages, and family experiences helps researchers better understand how FTD impacts real lives, not just how it appears in clinical settings.

Learn more about Registry participant roles.

Information Stays Up to Date

FTD disorders change over time, and so can your experience. A research ready registry makes it easy for participants or their legally authorized representatives to update information as things change, such as symptoms, diagnoses, or research interests.

Keeping this information current helps researchers ask better questions and design studies that reflect the real needs of individuals and families.

People Stay Connected, Not Just Signed Up

Being research ready is not just about joining once. It is about staying connected.

A strong registry shares information back with the community, explains why questions are being asked, and shows how shared experiences help shape research. When participants feel informed and valued, they are more likely to stay involved over time.

Privacy Is Protected

Many people worry about how their information will be used, and that is completely understandable. A research ready registry is built with privacy protections from the start.

Personal details are kept secure, and identifying information is never shared with researchers. Information is shared in a de identified way so research can move forward while individual identities remain protected.

It Helps Turn Interest Into Action

When enough people join and stay engaged, researchers can see that the FTD community is ready to participate in research.

Strong participation gives researchers the confidence to move ahead with new studies, explore potential treatments, and invest time and resources in FTD research.

Numbers Have Power

Every person who joins the Registry adds to that momentum. Even if you never take part in a study, being counted shows that there is a real and engaged community behind the research.

Those numbers help open doors to new studies, new collaborations, and future trials.

The bottom line:
A research ready registry is about people coming together. By sharing experiences in a safe and thoughtful way, the FTD community helps make research possible and helps ensure future discoveries are grounded in real lives and real needs.