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ALLFTD Study for Frontotemporal Lobar Degeneration

This observational study, called ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD), is looking at people with Frontotemporal Lobar Degeneration (FTLD), Progressive Supranuclear Palsy (PSP), Corticobasal Degeneration (CBD), Behavioral Variant Frontotemporal Dementia (bvFTD), and Semantic Variant Primary Progressive Aphasia (svPPA). The study aims to understand how these conditions change over time. Researchers will measure changes in brain size, thinking abilities (NIH Examiner Executive Composite Score), and overall impairment (Multidomain Impairment Rating Scale) over five years. You may be able to join if you are 18 or older and have a family history of FTLD, either with a known genetic mutation (like MAPT, GRN, C9orf72) or a strong family history of the condition. The study is currently ongoing and plans to include 2100 participants.

Study design
This is an observational study, meaning it watches how conditions progress naturally without testing a specific treatment. It plans to enroll 2100 participants.
What's involved
Participants in the 'longitudinal arm' will have comprehensive clinical, functional, imaging, and biofluid data collected annually. The 'biofluid-focused arm' involves limited clinical data alongside biospecimen collection.
Compensation
Not stated in the trial record.
Follow-up
Participants will be followed for five years, with measurements taken at baseline, and then at 1, 2, 3, 4, and 5 years.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT04363684

ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD)

Recruiting
Not specifiedAges 18+Observational
Mayo Clinic
~2,100 participants
Updated 2026-07-30 on ClinicalTrials.gov

At a glance

Recruiting sites
26 of 27 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Change in Brain Volumes
Measured over Baseline, 1 Year, 2 Year, 3 Year, 4 Year, 5 Year
+2 more outcomes measured

Conditions

Frontotemporal Lobar Degeneration (FTLD)
Progressive Supranuclear Palsy (PSP)
Corticobasal Degeneration (CBD)
Behavioral Variant Frontotemporal Dementia (bvFTD)
Semantic Variant Primary Progressive Aphasia (svPPA)
Nonfluent Variant Primary Progressive Aphasia (nfvPPA)
FTD With Amyotrophic Lateral Sclerosis (FTD/ALS)
Amyotrophic Lateral Sclerosis
Oligosymptomatic PSP (oPSP)
C9orf72
GRN Related Frontotemporal Dementia
MAPT Gene Mutation
TBK1 Gene Mutation
Oligosymptomatic Progressive Supranuclear Palsy

Explore related trials

Amyotrophic Lateral SclerosisBehavioral variant of frontotemporal dementiaCorticobasal DegenerationFrontotemporal DementiaPrimary Progressive Nonfluent AphasiaProgressive Supranuclear PalsySemantic Variant Primary Progressive AphasiaC9orf72 GeneGRN GeneMAPT Gene

Where it's being run

27 sites across 22 states
California3
Maryland2
New York2
Texas2
Alabama1
Colorado1
Florida1
Georgia1

Study leadership

  • Bradley Boeve, MD · PRINCIPAL_INVESTIGATOR · Mayo Clinic
  • Adam Boxer, MD, PhD · PRINCIPAL_INVESTIGATOR · University of California, San Francisco
  • Howie Rosen, MD · PRINCIPAL_INVESTIGATOR · University of California, San Francisco

Who to contact

Leah K Forsberg, PhD
[email protected]
507-293-9577
Email the study team

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Do you actually qualify for this trial?

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Eligibility criteria

Inclusion

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.
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)

Exclusion

Known presence of a structural brain lesion (e.g. tumor, cortical infarct) that could reasonably explain symptoms in a symptomatic participant.
Known presence of an Alzheimer's disease causing mutation in PSEN1, PSEN2 or APP; or biomarker evidence for Alzheimer's disease as a cause of the clinical syndrome.
A previous history of Korsakoff encephalopathy, severe alcohol dependence (within 5 years of onset of dementia), frequent alcohol or other substance intoxication, or other neurological disorder.
Evidence through history or laboratory testing of uncorrected B12 deficiency (B12 \< 95% of local laboratory's normal value), unregulated hypothyroidism (TSH \>150% of normal), HIV positive, renal failure (creatinine \> 2), liver failure (ALT or AST \> two times normal), respiratory failure that requires supplemental oxygen, large confluent white matter lesions, significant systemic medical illnesses such as deteriorating cardiovascular disease.
Current medication likely to affect CNS functions in the opinion of the site PI.
In the site investigator's opinion, the participant cannot complete sufficient key study procedures. The participant may be enrolled into the biofluid-focused arm if they can tolerate a blood draw and short clinical exam, but must be able to complete at least 75% of study procedures for enrollment into the longitudinal arm.

What this trial measures

  • Change in Brain VolumesBaseline, 1 Year, 2 Year, 3 Year, 4 Year, 5 Year

    Compare rates of change in whole brain and regional volumes between asymptomatic f-FTLD and symptomatic f- and s-FTLD, measured using MRI.

  • Change in neuropsychological batteryBaseline, 1 Year, 2 Year, 3 Year, 4 Year, 5 Year

    Evaluate change in performance on a neuropsychological battery in asymptomatic f-FTLD as well as symptomatic f-FTLD and s-FTLD.

  • Change in Multidomain Impairment Rating (MIR) ScaleBaseline, 1 Year, 2 Year, 3 Year, 4 Year, 5 Year

    Annual change in MIR score (total score 0-3), which is a new global scale for FTLD that incorporates behavioral, cognitive, and motor dysfunction in the rating.