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Participating in Research

You and your loved ones may be able to take part in different types of research studies, such as clinical trials, observational studies, brain donation, and more. Select a resource below to learn more about the types of medical research, questions to ask, and the rules that protect you.

Please visit our BRAIN DONATION page for information on donating a brain for research. To learn more about opportunities to enroll in FTD research, read our FIND A STUDY page.

Office for Human Research Protections

The Office for Human Research Protections (OHRP) protects the rights, safety, and well-being of people in research conducted or supported by the U.S. Department of Health and Human Services. It offers resources, such as:

National Institutes of Health

The National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services (HHS), is the nation's medical research agency. It offers resources, including:

Association for frontotemporal Degeneration

The Association for Frontotemporal Degeneration (AFTD) is an advocacy organization with a mission to improve the lives of people affected by FTD. Its website offers:

CurePSP

CurePSP is an advocacy organization working to improve awareness, education, and care for prime of life neurodegenerative diseases. It offers:

  • An information page on clinical trial participation with videos and a brochure titled "Learning about Clinical Trials: A Guide for Individuals and their Loved Ones."

FTD Disorders Registry

The FTD Disorders Registry provides the following resources:

 

** Any resources that the FTD Disorders Registry (FTDDR) provides are for informational purposes only. FTDDR is not responsible for and does not endorse the materials at the linked sites. Advice regarding your personal medical management should be obtained through consultation with a healthcare provider who is familiar with your medical history.