Studies Seeking Participants

Participating in research can bring new ways to help families today and build hope for a better future.

The following list is not all-inclusive. Studies vary in potential benefits and risks, who may be eligible, and the locations of clinical sites.

Consider enrolling in the FTD Disorders Registry. The Registry is a secure, non-profit database that serves to notify people when they may be eligible for a research study while learning through survey research from people with lived experience with FTD disorders.

Researchers interested in having their study information distributed to our community should contact

The following clinical trials are recruiting people with FTD caused by GRN, a specific genetic cause of FTD. For more on FTD and genetics, click here. For some studies, you may not be eligible for future trials once you participate. Learn about all your research participation options before making a decision.

You may also choose to find out more about the following featured studies:

Clinical trials and studies aren’t the only way to participate in research! You may also wish to consider:

  • The FTD Disorders Registry features ways to participate in research, to spur innovation that will lead to effective treatments and therapies.
  • ALLFTD Study – ARTFL-LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) is a comprehensive natural history study that targets the progression and treatment of FTD, open to anyone with an FTD disorder and to any member of a family with a history that suggests FTD. Funded by the National Institutes of Health (NIH), ALLFTD combines the research efforts of the existing Advancing Research and Treatment of Frontotemporal Lobar Degeneration (ARTFL) and Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS) studies to form a multi-side consortium that allows researchers to work collaboratively to advance FTD knowledge for future clinical trials. ALLFTD is now actively recruiting participants at certain study sites, depending on local conditions. To ensure safety during the COVID-19 pandemic, the project is recruiting and seeing participants using a mix of in-person and virtual telemedicine appointments. You can visit the ALLFTD website to find the study site closest to you and contact the site coordinator for more information.

PLEASE NOTE: AFTD is under no obligation to publicize any study, and may turn down such a request at any time. AFTD at no time “endorses” or “approves” any study, whether or not it chooses to publicize it.