Participating in Research
FTD Resources
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.
To learn more about opportunities to enroll in FTD research, read our FIND A STUDY page. Knowing one's genetic status is necessary to be eligible for certain clinical trials; find out more on the GENETICS OF FTD page. Visit our BRAIN DONATION page for information on donating a brain for research.
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:
- Informational videos about participating in medical research.
- Factsheets about the rules that protect research volunteers.
- A list of questions (PDF) to ask when deciding whether or not to volunteer for research.
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:
- The NIH website, "Clinical Trials and You," has answers to common questions on clinical trial participation.
- The National Institute on Aging (NIA) has articles on the benefits and risks of clinical trial participation and how they work.
- An infographic titled, "Why do researchers do different kinds of clinical studies (PDF)," shows how observational studies and clinical trials are different.
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:
- Information pages about what to expect and how to participate in observational studies and clinical trials.
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."
The FTD Disorders Registry provides the following resources:
- An article titled "Minority Voices: Ensuring Racial and Cultural Diversity in Research."
- A series of videos on "Perspectives in FTD Research"
- A video titled "What is a Registry?"
- A video titled "Research Motivations"
The FTD Disorders Registry supports clinical trials in all of the forms of FTD. You can view more information about studies currently enrolling participants on our Find A Study page.
** 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.