for people ages 18-90 (full criteria)
Healthy Volunteers
healthy people welcome
study started
estimated completion
Principal Investigator
Howard Rosen, MD (ucsf)
Photo of Howard Rosen
Howard Rosen



This study is being done to learn more about normal thinking and behavior, mild thinking and behavior problems, Frontotemporal Dementia and other forms of dementia in families in which one or more relatives have a mutation associated with Frontotemporal Dementia.


This multicenter study will enroll 300 members of familial Frontotemporal Dementia (FTD) families across 8 experienced FTD research centers with a known mutation in MAPT, PGRN, or C9ORF72 (100 mutation carriers with mild dementia or minimally symptomatic yet non-demented, 100 asymptomatic mutation carriers, and 100 clinically normal relatives who are non-mutation carriers) to obtain annual assessments including T1-MRI, FLAIR, diffusion tensor imaging (DTI), ASL perfusion (ASLp), intrinsic connectivity functional MRI (icfMRI), MR spectroscopy (MRS), CSF, blood, and behavioral, neuropsychological and functional assessment, for a total of three assessments per participant.

A primary goal of this study is to identify the most robust and reliable methods to track disease progression in familial FTD so that disease-modifying therapeutic trials can be designed appropriately.


Familial Frontotemporal Dementia Frontotemporal Dementia MAPT PGRN C9ORF72 Dementia Aphasia, Primary Progressive Pick Disease of the Brain Frontotemporal Dementia - MAPT Frontotemporal Dementia - PGRN Frontotemporal Dementia - C9OR72


You can join if…

Open to people ages 18-90

  1. Must be a member of family with a known mutation in one of the three major FTLD related genes: MAPT, PGRN, or C9ORF72.
  2. At least 18 years of age.
  3. The predominant phenotype in the kindred must be cognitive/behavioral (ie, kindreds in whom parkinsonism or ALS is the predominant clinical phenotype among affected relatives may be excluded)
  4. Have a reliable informant who personally speaks with or sees that subject at least weekly.
  5. Subject is sufficiently fluent in English to complete all measures
  6. Subject must be willing and able to consent to the protocol and undergo yearly evaluations over 3 years.
  7. Subject must be willing and able to undergo neuropsychological testing (at least at baseline visit).
  8. Subject must have no contraindication to MRI imaging.

You CAN'T join if...

  1. Known presence of a structural brain lesion (e.g. tumor, cortical infarct).
  2. Presence of another neurologic disorder which could impact findings (eg, multiple sclerosis).
  3. Subject is unwilling to return for follow-up yearly, undergo neuropsychological testing and MR imaging.
  4. Subject has no reliable informant.


  • University of California, San Francisco, Memory and Aging Center, Department of Neurology accepting new patients
    San Francisco California 94358 United States
  • University of British Columbia accepting new patients
    Vancouver British Columbia V6T 2B5 Canada

Lead Scientist at UC Health

  • Howard Rosen, MD (ucsf)
    Professor, Neurology. Authored (or co-authored) 255 research publications.


accepting new patients
Start Date
Completion Date
Mayo Clinic
Mayo Clinic Clinical Trials
Study Type
Last Updated