Home › Frontotemporal Dementia › NCT03225144
Investigating Complex Neurodegenerative Disorders Related to Amyotrophic Lateral Sclerosis and Frontotemporal Dementia
Who can join
Ages 18 to 110 · All sexes
Full eligibility criteria
* INCLUSION CRITERIA: Patients will be included if they * 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 CRITERIA: Patients will be excluded if they * 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.
About the study
Background:
Neurodegenerative disorders can lead to problems in movement or memory. Some can cause abnormal proteins to build up in brain cells. Researchers want to understand whether these diseases have related causes or risk factors.
Objective:
To test people with movement or thinking and memory problems to see if they are eligible for research studies.
Eligibility:
People ages 18 and older with a neurodegenerative disorder associated with accumulation of TDP-43 or Tau proteins
Design:
Participants will have a screening visit. This may take place over 2-3 days. Tests include:
Medical history
Physical exam
Questions about behavior and mood
Tests of memory, attention, concentration, and thinking
Movement measurement. The speed at which participants can stand up from a chair, tap their finger and foot, and walk a short distance will be measured. Some movements will be videotaped. They will be videotaped while they speak and read a paragraph.
Blood tests. This might include genetic testing.
Lung and breathing tests
MRI. They will lie on a table that slides into a cylinder that takes pictures of the body. Some participants will get a dye through IV.
Electromyography. A thin needle will be inserted into the muscles to measure electrical signals.
Nerve tests. Small electrodes on the skin record muscle and nerve activity.
A small piece of skin may be removed.
A skin or blood sample may be taken to create stem cells.
Optional lumbar puncture. A needle will be inserted into the space between the bones of the back to collect fluid.
If participants are not eligible for current studies, they may be contacted in the future.
Sponsor: National Institute of Neurological Disorders and Stroke (NINDS) · Participants: 360 · Started: Oct 11, 2017
Contact the study team
- Carol H Hoffman · Phone: (301) 451-1229
- Justin Y Kwan, M.D. · Phone: (301) 496-7428
Official record on ClinicalTrials.gov — NCT03225144
Locations in the U.S.
| Maryland | National Institutes of Health Clinical Center, Bethesda |
Conditions
- Frontotemporal Dementia
- Amyotrophic Lateral Sclerosis
- Progressive Supranuclear Palsy
- ALS and Motor Neuron Disease
- Corticobasal Degeneration
From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.