Alzheimer's Disease Education and Referral Center

Longitudinal Evaluation of Familial Frontotemporal Dementia (LEFFTDS)

Longitudinal Evaluation of Familial Frontotemporal Dementia (LEFFTDS)

Overall Status: 
Recruiting
Brief Description: 

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.

Patient Qualifications: 
Min AgeMax AgeGenderHealthy Volunteers
18 Years
90 Years
Both
Yes
Inclusion Criteria: 
    • 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)
Exclusion Criteria: 
    • 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
Detailed Description: 

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.

Locations: 
Map Marker CityStateZip CodeStatusPrimary Contact

Geolocation is 37.4202011, -122.1605715

University of California, San Francisco, Memory and Aging Center, Department of Neurology
San Francisco
California
94358
Recruiting
Reilly Dever
415-467-0670
reilly.dever@ucsf.edu

Geolocation is 30.2606613, -81.460856

Mayo Clinic Florida
Jacksonville
Florida
32224
Recruiting
Dana Haley
904-953-9680
Haley.Dana@mayo.edu

Geolocation is 42.3782065, -71.0602131

Harvard University
Charlestown
Massachusetts
02129
Recruiting
Samantha Krivensky
617-726-6205
skrivensky@mgh.harvard.edu

Geolocation is 44.0557303, -92.5253639

Mayo Clinic
Rochester
Minnesota
55905
Recruiting
Christina Dheel
507-293-5551
dheel.christina@mayo.edu

Geolocation is 38.6212468, -90.2526163

Washington University
Saint Louis
Missouri
63110
Recruiting
Lynne Jones
314-362-8420
jonesly@wustl.edu

Geolocation is 40.8409822, -73.9447994

Columbia University
New York
New York
10032
Recruiting
Masood Manoochehri
mm2626@cumc.columbia.edu

Geolocation is 39.9583587, -75.1953934

Univerisity of Pennsylvania
Phildelphia
Pennsylvania
19104
Recruiting
Christina Ray
215-349-5873
rayc@mail.med.upenn.edu

Geolocation is 49.2650543, -123.2459921

University of British Columbia
Vancouver
British Columbia
V6T 2B5
Recruiting
Pheth Sengdy
604 822 7989
Pheth.Sengdy@vch.ca
Lead Sponsor: 
Agency
Mayo Clinic
Collaborator Sponsor: 
Agency
National Institute on Aging (NIA)
National Institute of Neurological Disorders and Stroke (NINDS)
Facility Investigators: 
NameRoleAffiliation
Bradley Boeve, MD
Principal Investigator
Mayo Clinic
Howard Rosen, MD
Principal Investigator
University of California, San Francisco
Study Contact: 
NamePhoneEmail
Christina Dheel
507-293-5551
Josie Williams
507-293-5354
Locations
 
 
ClinicalTrials.gov ID 
NCT02372773 (follow link to view full record on ct.gov in new window)
Official Title: 
Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects
Study Start Date: 
April 2015
Study End Date: 
April 2019
Enrollment: 
300