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Investigating Disorders Related to Amyotrophic Lateral Sclerosis and Frontotemporal Dementia

Recruiting

Researchers are looking for adults who are diagnosed with frontotemporal dementia, a motor neuron disorder, or a related adult-onset neurodegenerative disorder to participate in ongoing research or be considered for future studies.

Minimum Age Maximum Age Gender Healthy Volunteers
18 Years N/A All No
October 2017
October 30, 2025
200

  • Diagnosis by a neurologist of frontotemporal dementia, frontotemporal lobar degeneration, primary progressive aphasia, semantic dementia, motor neuron disorder, amyotrophic lateral sclerosis, primary lateral sclerosis, progressive bulbar palsy, corticobasal syndrome, Huntington's disease, or other related adult-onset neurodegenerative disorder

  • 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
  • Unstable medical condition that makes participation unsafe
  • Use of daytime ventilator support
  • Inability to travel to the National Institutes of Health (NIH) Clinical Center
  • People with pacemakers or other implanted electrical devices, brain stimulators, dental implants, aneurysm clips, metallic prostheses or implants, permanent eyeliner, implanted delivery pumps, or shrapnel fragments will not be excluded but will not undergo magnetic resonance imaging

Participants will undergo diagnostic screening tests, tests to measure cognitive and motor function, and blood draws for clinical testing and research. Additional diagnostic and research testing, including magnetic resonance imaging, electromyography, neuropsychological testing, lumbar puncture, and skin biopsy, may be done in selected participants.

For more information about this study or the NIH Clinical Center, contact the Patient Recruitment and Public Liaison Office at 800-411-1222 (TTY: 866-411-1010) or prpl@mail.cc.nih.gov.

Name City State Zip Status Primary Contact
National Institutes of Health Clinical Center
Bethesda Maryland 20892 Recruiting For more information at the NIH Clinical Center contact Office of Patient Recruitment (OPR)
800-411-1222
prpl@cc.nih.gov

National Institute of Neurological Disorders and Stroke (NINDS)

Name Role Affiliation
Mary Kay Floeter, MD Principal Investigator National Institute of Neurological Disorders and Stroke (NINDS)

Name Phone Email
Carol H. Hoffman 301-451-1229 carol.hoffman@nih.gov

NCT03225144

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