It is a pivotal time for FTD clinical research. New therapies have advanced to phase 3 clinical trials. Treatments for FTD caused by variants in specific genes are closer than ever. Trials targeting sporadic FTD are also emerging, such as an ongoing trial on semantic variant primary progressive aphasia (svPPA) and an upcoming platform trial in progressive supranuclear palsy (PSP), among others. And thanks to enhanced research tools and expertise, more potential treatments are in progress.

We know that our community is strongly engaged and interested in education, support, and research. In May, record numbers of families attended AFTD’s Annual Education Conference, and many took part in the first Genetic FTD Symposium. AFTD volunteers are rapidly increasing in number, as well as engaging through AFTD’s Advocacy Action Center and collaborative initiatives such as the University of Pennsylvania and AFTD’s Clinical Research Learning Institute Ambassador program, and many others.

Yet, since FTD disorders are not as common or well understood as diseases such as Alzheimer’s, clinical trials face the challenge of recruiting enough participants at specific medical centers, during specific stages of disease, who have been diagnosed with the specific FTD subtypes that are being treated in each trial. Concern over participant numbers also discourages companies from investing in future FTD drug development.

For clinical trials to be successful, we need tools that can bring together an engaged research community from many different locations and backgrounds.

The Role of the FTD Disorders Registry

While AFTD’s commitment to clinical trials is multifaceted, one of its most significant investments is the FTD Disorders Registry, created as a joint vision of AFTD and the Bluefield Project to Cure FTD, with support from the Rainwater Charitable Foundation. The Registry is a secure  online database that collects genetic, clinical, and lived-experience insights from people touched by all forms of FTD, which are made available to researchers while protecting the privacy of participants.

The Registry helps address gaps in research participation by connecting researchers with eligible participants and notifying individuals about studies they may qualify for. Numbers have power – every person who participates helps bring potential treatments closer to reality.

Anyone with an interest in FTD research can join the Registry – including persons diagnosed, family members, care partners, researchers, healthcare professionals, and other allies. More than 6,700 individuals whose lives have been impacted by FTD have already done so including nearly 1,700 persons diagnosed.  This makes the Registry the single largest dataset of participants impacted by FTD, and a critical tool to drive research progress.

Eligible individuals residing in the U.S. or Canada can also join the Registry Research Study, where participants can contribute to lived experience surveys and upload medical reports – an important step in unlocking better understanding, faster diagnoses, and future treatments.

In 2024, the Registry debuted an enhanced platform that gives participants new ways to contribute, such as linking their profiles to electronic health records and securely sharing genetic testing results, while maintaining strict protections for privacy. These expanded options provide researchers with richer, more comprehensive data to help drive progress in understanding and treating FTD disorders.

What’s New with The Registry

The team behind the Registry has shared findings at many research conferences around the world, highlighting data trends and insights into the lived experience of FTD disorders. All their presentations use summary-level data only and never include any personally identifiable information.

Registry staff and collaborators have presented four abstracts since the start of 2025 alone. Three of these presentations were given at the American Academy of Neurology’s annual meeting in April.

Excitingly, the Registry launched a new Researcher Portal in June. This important tool allows the research community to view deidentified summary information on Registry participants, and to request specific deidentified datasets to support their research.

Finally, the Registry continues to inform the FTD community about ongoing research opportunities on their Find a Study page. In May, the Registry helped inform the community about five new research studies.

How You Can Help

Researchers and clinicians:

• Spread awareness to your clinical center or university-associated hospital about the Registry. While each center may only see a small number of people with FTD, every single person is important. Remember, numbers have power.
• Check out the Researcher Portal and see if it can assist with your research.
• If your research needs participants, reach out to staff at the Registry, who may be able to help.

FTD community:

• Continue to take part in volunteering and advocacy activities.
• Consider learning more about the Registry and participating in research studies that are the right fit for you. And remember that simply enrolling in the Registry is an act of advocacy!
• Visit AFTD’s website to learn other ways you can help us advance the science of FTD.

Peer organizations:

• Whether you belong to an academic, medical, industry, or nonprofit organization, remember that a rising tide lifts all boats – so share information about the Registry with your community.

Everyone:

• The vast majority of FTD research in the U.S. is funded by the federal government, particularly the National Institutes of Health (NIH), which has long enjoyed bipartisan support. Drug development and clinical trials depend heavily upon its continued progress – for example, the renewal of federal support for the ALLFTD natural history study and other pivotal programs. Join us today in urging your legislators to protect FTD research and prioritize FTD funding at the NIH. Learn more and contact your legislator.