Genes, Brains and Decisions

  • Study Director: Winston Chiong, MD, PhD
  • Sponsor: National Institutes of Health (NIH)
  • Official Study Title: Genes, Brains and Decision-Making
  • Conditions Studied: Family members of patients with genetic forms of frontotemporal dementia (specifically caused by one of the three most common genes associated with frontotemporal dementia: microtubule-associated protein tau [MAPT], progranulin [known as granulin or GRN], or chromosome 9 open reading frame 72 [C9ORF72]) who do not themselves have a diagnosis of dementia.

Purpose of the Study

The purpose of this study is to understand how genes in familial frontotemporal dementia affect parts of the brain involved in decision-making. We will compare decision-making in family members of patients who carry genes for FTD, comparing family members who have these genes to those who don’t. Recruited participants will be family members of patients with a genetic form of frontotemporal dementia who are also enrolled in the ARTFL-LEFFTDS Longitudinal Frontotemporal Lobar Degeneration Study (ALLFTD).

Study Details

Inclusion criteria:

  1. Must be a member of a family with a known mutation in one of the three major FTLD related genes: MAPT, GRN or C9ORF72. The participant does not have to know their own genetic status.
  2. At least 18 years of age.
  3. Subject is sufficiently fluent in English to complete all measures.

Exclusion criteria:

  1. Known presence of a structural brain lesion (e.g., tumor, cortical infarct).
  2. Presence of another neurologic disorder that could impact findings (e.g, multiple sclerosis).

What to Expect

Testing: All participants will be asked to complete a series of online behavioral tasks in which you will be asked to make decisions about money. Each task should take up to 45 minutes, and after completion of each set of tasks, you will receive a gift card for up to $60. Based upon the task responses provided, we may ask participants to come to the University of California, San Francisco Memory and Aging Center for more detailed in-person testing. You can decline; in other words, agreeing to the online study does not mean that you have to be part of the in-person tests or complete any other tasks. Research studies include only people who choose to take part. Please take your time to make your decision about participating and discuss your decision with your family or friends if you wish. If you have any questions, you may ask the researchers.

The Frequency of Visits: Some participants will be asked to participate in a one-time in-person visit to the UCSF Memory and Aging Center for onsite fMRI testing

Materials Needed Prior to Evaluation: None

Costs: No costs will be charged for any of the study procedures. For participants who are asked to come to the San Francisco Bay Area for in-person testing, travel and lodging for the study will be reimbursed.

Contact Information

If you have any questions, you may contact the research coordinator for the study, Brandon Leggins, at [email protected] or 415.502.7883. Alternatively, you can contact the principal investigator of the study, Winston Chiong, MD, PhD, at 415.502.7326.