Differences in Motor Features of C9orf72, MAPT, or GRN Variant Carriers With Familial Frontotemporal Lobar Degeneration.
Philip Wade Tipton, Angela B Deutschlaender, Rodolfo Savica...
https://pubmed.ncbi.nlm.nih.gov/35790423Actively Recruiting
Age: 18Years +
All Genders
Healthy Volunteers
ID04363684
ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) Study to Characterize Sporadic and Familial FTLD Patients and Family Members
Led by Mayo Clinic · Updated on 2025-07-11
2100
Participants Needed
27
Research Sites
N/A
Total Duration
On this page
Sponsors
M
Mayo Clinic
Lead Sponsor
U
University of California, San Francisco
Collaborating Sponsor
AI-Summary
What this Trial Is About
Researchers are studying Frontotemporal Lobar Degeneration (FTLD), including both sporadic and familial forms, along with asymptomatic family members of those with familial FTLD. This research combines two consortia, ARTFL and LEFFTDS, to better understand these conditions and support future clinical trials. The study focuses on characterizing participants over time through detailed assessments. The study includes two groups: a longitudinal arm and a biofluid-focused arm. Participants in the longitudinal arm attend annual clinic visits for comprehensive assessments including clinical, functional, imaging, and biofluid data collection. The biofluid-focused arm involves a single clinic visit with limited clinical data collection alongside biospecimen sampling. Both arms aim to gather important information about FTLD progression. Participants will undergo evaluations such as brain imaging and clinical tests at baseline and yearly for up to five years in the longitudinal arm. Researchers will measure changes in brain volumes, executive function scores, and impairment ratings over time. Plasma neurofilament light chain levels will also be assessed after five years. Safety monitoring and follow-up continue throughout the study, which lasts several years depending on the participant's arm.
CONDITIONS
Brief Title
ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD)
Who Can Participate
Age: 18Years +
All Genders
Healthy Volunteers
Eligibility Criteria
You may qualify if you...
- Adults aged 18 years and older
- Participants with familial FTLD who have a known mutation in major genes such as MAPT, GRN, or C9orf72, or an autosomal dominant family history of FTLD verified by medical records or detailed family history
- Sporadic FTLD participants with symptoms and no known family history or genetic mutation, meeting research criteria for FTLD syndromes including PSP, svPPA, nfvPPA, CBD/CBS, bvFTD, or FTD/ALS
- Participants eligible for the biofluid-focused arm must meet general inclusion criteria and may be included regardless of primary language if consent is available
- Ability to complete study procedures or tolerate blood draw and short clinical exam for biofluid-focused arm
You will not qualify if you...
- Presence of a structural brain lesion that could explain symptoms
- Known mutations causing Alzheimer's disease or biomarker evidence indicating Alzheimer's as cause
- History of Korsakoff encephalopathy, severe alcohol dependence within 5 years before dementia onset, frequent intoxication, or other neurological disorders
- Uncorrected vitamin B12 deficiency, unregulated hypothyroidism, HIV positive status, renal or liver failure, respiratory failure requiring oxygen, large white matter lesions, or significant systemic illnesses
- Use of medications likely to affect central nervous system functions as judged by the investigator
- Inability to complete at least 75% of study procedures for longitudinal arm; may still join biofluid arm if able to tolerate blood draw and short exam
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
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Your Study Journey
Screening
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
Longitudinal Monitoring
Duration - Up to 5 years
Participants in the longitudinal arm undergo comprehensive annual assessments including clinical, functional, imaging, and biofluid data collection.
Annual visits for up to 5 years
Single Visit Assessment
Duration - 1 day
Participants in the biofluid-focused arm complete a single clinic visit involving limited clinical data collection and biospecimen sampling.
1 visit (in-person)
Trial Site Locations
Total: 27 locations
1
University of Alabama Birmingham
Birmingham, Alabama, United States, 35233
Actively Recruiting
2
University of California, Los Angeles
Los Angeles, California, United States, 90095
Actively Recruiting
3
University of California, San Diego
San Diego, California, United States, 92093
Actively Recruiting
4
University of California San Francisco
San Francisco, California, United States, 91358
Actively Recruiting
5
University of Colorado Denver
Denver, Colorado, United States, 80204
Actively Recruiting
6
Mayo Clinic Florida
Jacksonville, Florida, United States, 32224
Actively Recruiting
7
Emory University
Atlanta, Georgia, United States, 30322
Actively Recruiting
8
Northwestern University
Chicago, Illinois, United States, 60611
Actively Recruiting
9
Indiana University
Indianapolis, Indiana, United States, 46202
Actively Recruiting
10
Johns Hopkins University
Baltimore, Maryland, United States, 21287
Actively Recruiting
11
NIH
Bethesda, Maryland, United States, 20814
Actively Recruiting
12
Massachusetts General Hospital
Boston, Massachusetts, United States, 02114
Actively Recruiting
13
University of Michigan
Ann Arbor, Michigan, United States, 48109
Actively Recruiting
14
Mayo Clinic Rochester
Rochester, Minnesota, United States, 55905
Actively Recruiting
15
Washinton University in St. Louis
St Louis, Missouri, United States, 63110
Actively Recruiting
16
Cleveland Clinic Lou Ruvo Center for Brain Health
Las Vegas, Nevada, United States, 89106
Actively Recruiting
17
Mount Sinai
New York, New York, United States, 10029
Not Yet Recruiting
18
Columbia University
New York, New York, United States, 10032
Actively Recruiting
19
University of North Carolina, Chapel Hill
Chapel Hill, North Carolina, United States, 27514
Actively Recruiting
20
Case Western Reserve Medical Center
Cleveland, Ohio, United States, 44106
Actively Recruiting
21
University of Pennsylvania
Philadelphia, Pennsylvania, United States, 19104
Actively Recruiting
22
Vanderbilt University
Nashville, Tennessee, United States, 37235
Actively Recruiting
23
Nantz National Alzheimer Center Houston
Houston, Texas, United States, 77030
Actively Recruiting
24
UT San Antonio Health Science Center
San Antonio, Texas, United States, 78229
Actively Recruiting
25
University of Washington
Seattle, Washington, United States, 98195
Actively Recruiting
26
University of British Columbia
Vancouver, British Columbia, Canada
Actively Recruiting
27
University of Toronto
Toronto, Ontario, Canada
Actively Recruiting
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Research Team
L
Leah K Forsberg, PhD
H
Hilary Heuer, PhD
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
2
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