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ClinicalTrials.gov public records Last synced Jul 23, 2026, 11:23 AM EDT

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Showing 1–18 of 18 matching trials from the live ClinicalTrials.gov search.
Local D1 index available.
Filters: Condition: C9orf72 Clear all
Recruiting No phase listed Observational

Amyotrophic Lateral Sclerosis (ALS) Families Project

NCT03865420
View directory record Official record
Conditions
ALS
Interventions
Not listed
Lead sponsor
Columbia University
Other
Eligibility
18 Years to 105 Years
Enrollment
300 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2018 – 2027
U.S. locations
1
States / cities
New York, New York
Source: ClinicalTrials.gov public record
Updated Jan 6, 2026 · Synced Jul 23, 2026, 11:23 AM EDT
Completed Phase 2 Interventional Results available

A Phase 2 Study to Evaluate Safety of Long-term AL001 Dosing in Frontotemporal Dementia (FTD) Patients (INFRONT-2)

NCT03987295
View directory record Official record
Conditions
Frontotemporal Dementia
Interventions
AL001
Drug
Lead sponsor
Alector Inc.
Industry
Eligibility
18 Years to 85 Years
Enrollment
33 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2019 – 2024
U.S. locations
4
States / cities
San Francisco, California • Rochester, Minnesota • Philadelphia, Pennsylvania + 1 more
Source: ClinicalTrials.gov public record
Updated Dec 4, 2025 · Synced Jul 23, 2026, 11:23 AM EDT
Terminated Phase 2 Interventional Results available

A Phase 2 Study to Evaluate AL001 in C9orf72-Associated ALS

NCT05053035
View directory record Official record
Conditions
Amyotrophic Lateral Sclerosis
Interventions
AL001, Placebo
Drug
Lead sponsor
Alector Inc.
Industry
Eligibility
18 Years and older
Enrollment
5 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2021 – 2022
U.S. locations
3
States / cities
Tampa, Florida • Boston, Massachusetts • St Louis, Missouri
Source: ClinicalTrials.gov public record
Updated Jun 17, 2025 · Synced Jul 23, 2026, 11:23 AM EDT
Completed Phase 2 Interventional

A Phase 2a Study of TPN-101 in Patients With C9ORF72 ALS/FTD

NCT04993755
View directory record Official record
Conditions
Amyotrophic Lateral Sclerosis, Frontotemporal Dementia
Interventions
TPN-101, 400 mg/day, Placebo
Drug
Lead sponsor
Transposon Therapeutics, Inc.
Industry
Eligibility
18 Years and older
Enrollment
42 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2021 – 2023
U.S. locations
10
States / cities
La Jolla, California • Orange, California • San Francisco, California + 5 more
Source: ClinicalTrials.gov public record
Updated Apr 2, 2026 · Synced Jul 23, 2026, 11:23 AM EDT
Active, not recruiting Phase 1 Interventional

Acamprosate in C9orf72 Hexanucleotide Repeat Expansion Amyotrophic Lateral Sclerosis (ACALS)

NCT07204977
View directory record Official record
Conditions
Amyotrophic Lateral Sclerosis, Motor Neuron Disease
Interventions
Acamprosate calcium
Drug
Lead sponsor
National Institute of Neurological Disorders and Stroke (NINDS)
NIH
Eligibility
18 Years to 99 Years
Enrollment
30 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2026 – 2028
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated May 28, 2026 · Synced Jul 23, 2026, 11:23 AM EDT
Terminated Phase 1 Interventional

Study to Assess the Safety, Tolerability, Pharmacokinetics, and Effect on Disease Progression of BIIB078 Administered to Previously Treated Adults C9ORF72-Associated Amyotrophic Lateral Sclerosis (ALS)

NCT04288856
View directory record Official record
Conditions
Amyotrophic Lateral Sclerosis
Interventions
BIIB078
Drug
Lead sponsor
Biogen
Industry
Eligibility
18 Years and older
Enrollment
75 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2020 – 2022
U.S. locations
12
States / cities
La Jolla, California • Los Angeles, California • Palo Alto, California + 9 more
Source: ClinicalTrials.gov public record
Updated Apr 17, 2023 · Synced Jul 23, 2026, 11:23 AM EDT
Completed No phase listed Observational

Natural History and Biomarkers of Amyotrophic Lateral Sclerosis and Frontotemporal Dementia Caused by the C9ORF72 Gene Mutation

NCT01925196
View directory record Official record
Conditions
Amyotrophic Lateral Sclerosis, Frontotemporal Lobar Degeneration
Interventions
Not listed
Lead sponsor
National Institute of Neurological Disorders and Stroke (NINDS)
NIH
Eligibility
18 Years and older
Enrollment
50 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
Started 2013
U.S. locations
1
States / cities
Bethesda, Maryland
Source: ClinicalTrials.gov public record
Updated Jul 7, 2026 · Synced Jul 23, 2026, 11:23 AM EDT
Recruiting No phase listed Observational

The Pre-symptomatic Familial Amyotrophic Lateral Sclerosis (Pre-fALS) Study

NCT00317616
View directory record Official record
Conditions
Amyotrophic Lateral Sclerosis
Interventions
Not listed
Lead sponsor
University of Miami
Other
Eligibility
18 Years and older
Enrollment
500 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2006 – 2037
U.S. locations
1
States / cities
Miami, Florida
Source: ClinicalTrials.gov public record
Updated Mar 19, 2026 · Synced Jul 23, 2026, 11:23 AM EDT
Active, not recruiting No phase listed Observational Accepts healthy volunteers

Neurofilament Surveillance Project (NSP)

NCT04516499
View directory record Official record
Conditions
Frontotemporal Dementia, Frontotemporal Lobar Degeneration, FTD-GRN, FTD, FTLD
Interventions
Not listed
Lead sponsor
The Bluefield Project to Cure Frontotemporal Dementia
Other
Eligibility
18 Years to 85 Years
Enrollment
342 participants
Healthy volunteers
Accepts healthy volunteers
Timeline
2020 – 2027
U.S. locations
8
States / cities
San Francisco, California • Jacksonville, Florida • Baltimore, Maryland + 5 more
Source: ClinicalTrials.gov public record
Updated Jun 17, 2026 · Synced Jul 23, 2026, 11:23 AM EDT
Recruiting No phase listed Observational Accepts healthy volunteers

ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD)

NCT04363684
View directory record Official record
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
Interventions
Not listed
Lead sponsor
Mayo Clinic
Other
Eligibility
18 Years and older
Enrollment
2,100 participants
Healthy volunteers
Accepts healthy volunteers
Timeline
2020 – 2026
U.S. locations
25
States / cities
Birmingham, Alabama • Los Angeles, California • San Diego, California + 21 more
Source: ClinicalTrials.gov public record
Updated Jul 10, 2025 · Synced Jul 23, 2026, 11:23 AM EDT
Completed Phase 2 Interventional

Study of Safety, Tolerability, and Biological Activity of LAM-002A in C9ORF72-Associated Amyotrophic Lateral Sclerosis

NCT05163886
View directory record Official record
Conditions
Amyotrophic Lateral Sclerosis, ALS
Interventions
LAM-002A, Placebo
Drug · Other
Lead sponsor
OrphAI Therapeutics
Industry
Eligibility
18 Years and older
Enrollment
14 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2021 – 2025
U.S. locations
3
States / cities
Iowa City, Iowa • Baltimore, Maryland • Boston, Massachusetts
Source: ClinicalTrials.gov public record
Updated Jun 21, 2025 · Synced Jul 23, 2026, 11:23 AM EDT
Completed No phase listed Observational Accepts healthy volunteers

Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects

NCT02372773
View directory record Official record
Conditions
Familial Frontotemporal Dementia
Interventions
Not listed
Lead sponsor
Mayo Clinic
Other
Eligibility
18 Years to 90 Years
Enrollment
398 participants
Healthy volunteers
Accepts healthy volunteers
Timeline
2015 – 2020
U.S. locations
7
States / cities
San Francisco, California • Jacksonville, Florida • Charlestown, Massachusetts + 4 more
Source: ClinicalTrials.gov public record
Updated Aug 2, 2020 · Synced Jul 23, 2026, 11:23 AM EDT
Completed Phase 1Phase 2 Interventional Results available

Neurodegenerative Alzheimer's Disease and Amyotrophic Lateral Sclerosis (NADALS) Basket Trial

NCT05189106
View directory record Official record
Conditions
Amyotrophic Lateral Sclerosis, Alzheimer Disease, Mild Cognitive Impairment
Interventions
Baricitinib
Drug
Lead sponsor
Massachusetts General Hospital
Other
Eligibility
18 Years to 90 Years
Enrollment
17 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2022 – 2025
U.S. locations
2
States / cities
Boston, Massachusetts • Charlestown, Massachusetts
Source: ClinicalTrials.gov public record
Updated Jun 29, 2026 · Synced Jul 23, 2026, 11:23 AM EDT
Active, not recruiting Phase 2 Interventional Results available

Safety and Therapeutic Potential of the FDA-approved Drug Metformin for C9orf72 ALS/FTD

NCT04220021
View directory record Official record
Conditions
C9orf72 Amyotrophic Lateral Sclerosis (ALS), Frontotemporal Dementia
Interventions
Metformin
Drug
Lead sponsor
University of Florida
Other
Eligibility
18 Years to 80 Years
Enrollment
41 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2020 – 2026
U.S. locations
1
States / cities
Gainesville, Florida
Source: ClinicalTrials.gov public record
Updated Dec 1, 2025 · Synced Jul 23, 2026, 11:23 AM EDT
Completed No phase listed Observational

Understanding Clinical Phenotype and Collecting Biomarker Samples in C9ORF72 ALS

NCT02686268
View directory record Official record
Conditions
C9ORF72 Amyotrophic Lateral Sclerosis (ALS)
Interventions
Not listed
Lead sponsor
Washington University School of Medicine
Other
Eligibility
18 Years and older
Enrollment
128 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2015 – 2018
U.S. locations
7
States / cities
Los Angeles, California • Baltimore, Maryland • Amherst, Massachusetts + 4 more
Source: ClinicalTrials.gov public record
Updated Jul 7, 2021 · Synced Jul 23, 2026, 11:23 AM EDT
Completed Phase 1 Interventional

A Study to Assess the Safety, Tolerability, and Pharmacokinetics of BIIB078 in Adults With C9ORF72-Associated Amyotrophic Lateral Sclerosis

NCT03626012
View directory record Official record
Conditions
Amyotrophic Lateral Sclerosis
Interventions
BIIB078, Placebo
Drug
Lead sponsor
Biogen
Industry
Eligibility
18 Years and older
Enrollment
106 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2018 – 2021
U.S. locations
12
States / cities
La Jolla, California • Los Angeles, California • Palo Alto, California + 9 more
Source: ClinicalTrials.gov public record
Updated Jan 13, 2022 · Synced Jul 23, 2026, 11:23 AM EDT
Completed No phase listed Observational

Voices Of Individuals: Challenges and Experiences Of bvFTD

NCT04060082
View directory record Official record
Conditions
Frontotemporal Dementia, Frontotemporal Degeneration, Frontotemporal Dementia, Behavioral Variant, FTD
Interventions
Telephone Interview
Other
Lead sponsor
University of Pennsylvania
Other
Eligibility
18 Years and older
Enrollment
26 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2019 – 2025
U.S. locations
3
States / cities
Baltimore, Maryland • Bethesda, Maryland • Philadelphia, Pennsylvania
Source: ClinicalTrials.gov public record
Updated Jan 11, 2026 · Synced Jul 23, 2026, 11:23 AM EDT
Active, not recruiting Phase 1Phase 2 Interventional

A Study of PBFT02 in Participants With FTD and Mutations in the Granulin Precursor (GRN) or C9ORF72 Genes

NCT04747431
View directory record Official record
Conditions
Frontotemporal Dementia, FTD, FTD-GRN, Dementia Frontotemporal, C9orf72
Interventions
PBFT02
Drug
Lead sponsor
Passage Bio, Inc.
Industry
Eligibility
35 Years to 75 Years
Enrollment
30 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2021 – 2031
U.S. locations
4
States / cities
Ann Arbor, Michigan • Philadelphia, Pennsylvania • Nashville, Tennessee + 1 more
Source: ClinicalTrials.gov public record
Updated May 14, 2026 · Synced Jul 23, 2026, 11:23 AM EDT