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Observational Study of Neurodegenerative Disorders (ALS, FTD, PSP)

This observational study is looking into complex brain diseases like Amyotrophic Lateral Sclerosis (ALS), Frontotemporal Dementia (FTD), and Progressive Supranuclear Palsy (PSP). Researchers want to understand if these conditions, which can affect movement, memory, and thinking, have similar causes or risk factors. The study aims to identify people who might be eligible for other research studies and to create a registry of patients. They will collect clinical information to understand these disorders better. You can join if you are 18 or older and have been diagnosed with one of these neurodegenerative disorders.

Study design
This is an observational study planning to enroll 360 participants. It is designed to evaluate patients for eligibility in other research protocols and to maintain a patient registry.
What's involved
You will have a screening visit that may take 2-3 days, including medical history, physical exam, questions about behavior and mood, and tests of memory, attention, concentration, thinking, and movement.
Compensation
Not stated in the trial record.
Follow-up
Clinical information will be measured until October 30, 2027.

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

NCT03225144

Investigating Complex Neurodegenerative Disorders Related to Amyotrophic Lateral Sclerosis and Frontotemporal Dementia

Recruiting
Not specifiedAges 18+Observational
National Institute of Neurological Disorders and Stroke (NINDS)
~360 participants
Updated 2026-08-13 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Clinical information
Measured over 10/30/2027

Conditions

Frontotemporal Dementia
Amyotrophic Lateral Sclerosis
Progressive Supranuclear Palsy

Explore related trials

Amyotrophic Lateral SclerosisCorticobasal syndromeFrontotemporal DementiaHuntington's DiseaseMotor Neuron DiseasePrimary Progressive AphasiaProgressive Bulbar PalsyProgressive Supranuclear PalsySemantic dementiaSOD1 wt Allele

Where it's being run

1 sites across 1 states
Maryland1

Study leadership

  • Justin Y Kwan, M.D. · PRINCIPAL_INVESTIGATOR · National Institute of Neurological Disorders and Stroke (NINDS)

Who to contact

Carol H Hoffman
[email protected]
(301) 451-1229
Email the study team

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Do you actually qualify for this trial?

Add a private profile and we'll compare every criterion below against your situation — and tell you which ones are met, uncertain, or excluding.

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Eligibility criteria

Inclusion

Are age 18 or older
Have been given a diagnosis by a neurologist of frontotemporal dementia, primary progressive aphasia, semantic dementia, motor neuron disorder, amyotrophic lateral sclerosis, progressive bulbar palsy, corticobasal syndrome, Huntington disease or other related adult-onset neurodegenerative disorder OR
Carry a mutation in a gene that causes familial ALS or FTD

Exclusion

Have other major neurological or medical diseases that may cause progressive weakness or cognitive dysfunction, such as structural brain or spinal cord disease, metabolic diseases, paraneoplastic syndromes, infectious diseases, peripheral neuropathy or radiculopathy or other significant neurological abnormalities.
Have an unstable medical condition that, in the opinion of the investigators, makes participation unsafe
Require daytime ventilator support at the time of study entry
Are unable to travel to NIH
Patients with pacemakers or other implanted electrical devices, brain stimulators, dental implants, aneurysm clips (metal clips on the wall of a large artery), metallic prostheses (including metal pins and rods, heart valves, and cochlear implants), permanent eyeliner, implanted delivery pumps, or shrapnel fragments, metal fragments in the eye) will not be excluded but will not undergo magnetic resonance imaging.
Patients with tattoos above the neck or permanent make up will be excluded from undergoing 7T MRI.

What this trial measures

  • Clinical information10/30/2027

    Clinical information will be analyzed as part of our research to identify common features and differences among participants.