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Longitudinal Evaluation of Familial Frontotemporal Dementia (LEFFTDS)


The purpose of this study is to learn about thinking and behavior in families in which one or more relatives has a genetic mutation associated with frontotemporal dementia.

Minimum Age Maximum Age Gender Healthy Volunteers
18 Years 90 Years Both Yes
April 2015
June 2020

  • Member of family with a known mutation in one of the three major genes related to frontotemporal dementia: MAPT, PGRN, or C9ORF72
  • Predominant type of dementia is cognitive/behavioral
  • Reliable family member, friend, or caregiver who speaks with or sees the participant at least weekly
  • Fluent in English
  • Willing and able to undergo neuropsychological testing (at least at baseline visit)

  • Contraindication to magnetic resonance brain imaging
  • Known presence of a structural brain lesion, such as a tumor or cortical infarct
  • Presence of another neurological disorder that could impact the study results

This observational study will enroll people from families affected by familial frontotemporal dementia. At least one relative must have a known mutation in the MAPT, PGRN, or C9ORF72 genes. The study will include 100 mutation carriers with mild dementia or minimal symptoms but no dementia, 100 mutation carriers without symptoms, and 100 clinically normal noncarriers.

Participants will undergo assessments, including different kinds of magnetic resonance imaging;  magnetic resonance spectroscopy; cerebrospinal fluid and blood sampling; and behavioral, neuropsychological, and functional tests. Investigators will measure changes in cognition during 3 years shown by these test results.

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

Name City State Zip Status Primary Contact
University of California, San Francisco, Memory and Aging Center, Department of Neurology
San Francisco California 94358 Recruiting Elise Ong
Mayo Clinic Florida
Jacksonville Florida 32224 Recruiting Heather Cissel
Harvard University
Charlestown Massachusetts 02129 Recruiting Samantha Krivensky
Mayo Clinic
Rochester Minnesota 55905 Recruiting Kevin Nelson
Washington University
Saint Louis Missouri 63110 Recruiting Tina Nolte
Columbia University
New York New York 10032 Recruiting Masood Manoochehri
Univerisity of Pennsylvania
Philadelphia Pennsylvania 19104 Recruiting Jessica Bove
University of British Columbia
Vancouver British Columbia V6T 2B5 Recruiting Pheth Sengdy
604 822 7989

Mayo Clinic

  • National Institute on Aging (NIA)
  • National Institute of Neurological Disorders and Stroke (NINDS)

Name Role Affiliation
Bradley Boeve, MD Principal Investigator Mayo Clinic
Howard Rosen, MD Principal Investigator University of California, San Francisco

Name Phone Email
Leah Forsberg, PhD 507-293-5551
Josie Williams 507-293-5354


Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects