We are excited to announce the launch of the FTD Disorders Registry Researcher Portal, a powerful new tool designed to help researchers access the data they need to move frontotemporal degeneration (FTD) research forward faster.
The new portal allows qualified researchers to explore deidentified participant data summaries and request more detailed, deidentified datasets to support their IRB-approved studies. This streamlined process helps reduce delays in study recruitment and gives scientists a clearer picture of the availability of research-ready participants before launching their research.
Why This Matters
Many promising FTD studies face setbacks, not because of a lack of ideas, but because finding participants can be difficult and time-consuming. The Researcher Portal is designed to close that gap by giving researchers secure access to data from people who have already said, “I want to help.”
How It Works
Approved researchers can log in to the portal and view aggregate, deidentified data about the Registry population, such as age ranges, diagnosis type, or geographic distribution. If a study requires a specific population, researchers can submit a request for a tailored, deidentified dataset.
The Registry team reviews all requests and provides appropriate data for studies that meet ethical and scientific standards. Researchers never have direct access to participants, and personal information is never shared.
In addition to data access, the Registry can also assist with study recruitment. If a researcher is looking for participants who meet certain criteria, the Registry team can send recruitment emails on behalf of the researcher to eligible participants who have opted in to receive these opportunities. This allows researchers to reach potential participants, while keeping participant privacy fully protected.
Researchers: Join the Researcher Portal
What It Means for Participants
If you are already a Registry participant, this new portal increases the impact of your data. It makes it easier for researchers to understand the FTD disorders population and design better studies. You may be contacted by the Registry team about studies you might be eligible for, but only if you have opted in to receive those opportunities.
Not part of the Registry yet? Now is a great time to join. You will help researchers move more efficiently toward discoveries that matter, and you will be at the center of the effort to end FTD.
Join the Registry
Together, we are creating a smarter, faster path to progress.
