ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD)

Status: Recruiting
Location: See all (27) locations...
Study Type: Observational
SUMMARY

ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) represents the formalized integration of ARTFL (U54 NS092089; funded through 2019) and LEFFTDS (U01 AG045390; funded through 2019) as a single North American research consortium to study FTLD for 2019 and beyond.

Eligibility
Participation Requirements
Sex: All
Minimum Age: 18
Healthy Volunteers: t
View:

⁃ Familial FTLD (f-FTLD) participants (either is acceptable):

• members of families in whom at least one member has a known disease-associated mutation in one of the major genes that cause f-FTLD: MAPT, GRN, C9orf72 (or other rare genes)

• an autosomal dominant family history of a FTLD syndrome (without a known gene) verified by medical record review or well-documented family history including family members with a medical history consistent with FTLD or a related disorder.

⁃ Sporadic FTLD (s-FTLD) participants:

⁃ Sporadic participants should be symptomatic with no known family history nor a genetic mutation indicating f-FTLD. All sporadic participants must have an FTLD syndrome as a referring diagnosis; those determined by ALLFTD clinicians to have non-FTLD diagnoses will be excluded from longitudinal visits, but their baseline visit will be included in comparative datasets. For inclusion in the longitudinal follow-up, participants should meet research criteria for one of the following FTLD syndromes:

• Progressive Supranuclear Palsy (PSP)

• Semantic variant Primary Progressive Aphasia (svPPA)

• Nonfluent variant Primary Progressive Aphasia (nfvPPA)

• Corticobasal Degeneration (CBD)/Corticobasal Syndrome (CBS)

• Behavioral variant Frontotemporal dementia (bvFTD)

• Frontotemporal Dementia with Amyotrophic Lateral Sclerosis (FTD/ALS)

Locations
United States
Alabama
University of Alabama Birmingham
RECRUITING
Birmingham
California
University of California, Los Angeles
RECRUITING
Los Angeles
University of California, San Diego
RECRUITING
San Diego
University of California San Francisco
RECRUITING
San Francisco
Colorado
University of Colorado Denver
RECRUITING
Denver
Florida
Mayo Clinic Florida
RECRUITING
Jacksonville
Georgia
Emory University
RECRUITING
Atlanta
Illinois
Northwestern University
RECRUITING
Chicago
Indiana
Indiana University
RECRUITING
Indianapolis
Massachusetts
Massachusetts General Hospital
RECRUITING
Boston
Maryland
Johns Hopkins University
RECRUITING
Baltimore
NIH
RECRUITING
Bethesda
Michigan
University of Michigan
RECRUITING
Ann Arbor
Minnesota
Mayo Clinic Rochester
RECRUITING
Rochester
Missouri
Washinton University in St. Louis
RECRUITING
St Louis
North Carolina
University of North Carolina, Chapel Hill
RECRUITING
Chapel Hill
Nevada
Cleveland Clinic Lou Ruvo Center for Brain Health
RECRUITING
Las Vegas
New York
Columbia University
RECRUITING
New York
Mount Sinai
NOT_YET_RECRUITING
New York
Ohio
Case Western Reserve Medical Center
RECRUITING
Cleveland
Pennsylvania
University of Pennsylvania
RECRUITING
Philadelphia
Tennessee
Vanderbilt University
RECRUITING
Nashville
Texas
Nantz National Alzheimer Center Houston
RECRUITING
Houston
UT San Antonio Health Science Center
RECRUITING
San Antonio
Washington
University of Washington
RECRUITING
Seattle
Other Locations
Canada
University of Toronto
RECRUITING
Toronto
University of British Columbia
RECRUITING
Vancouver
Contact Information
Primary
Leah K Forsberg, PhD
forsberg.leah@mayo.edu
507-293-9577
Backup
Hilary Heuer, PhD
hilary.heuer@ucsf.edu
415-476-6743
Time Frame
Start Date: 2020-03-01
Estimated Completion Date: 2026-06-30
Participants
Target number of participants: 2100
Treatments
Longitudinal Arm
Annual clinic visits throughout the length of the study.
Biofluid-Focused Arm
Single clinic visit.
Authors
Murray Grossman, Aaron Ritter, Peter Pressman
Sponsors
Leads: Mayo Clinic
Collaborators: National Institute on Aging (NIA), University of California, San Francisco, National Institute of Neurological Disorders and Stroke (NINDS)

This content was sourced from clinicaltrials.gov