Understanding neurodegenerative disorders like ALS and frontotemporal dementia

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study aims to evaluate adults diagnosed with neurodegenerative disorders such as frontotemporal dementia and amyotrophic lateral sclerosis to determine their eligibility for further research. Participants will undergo a series of clinical assessments, including medical history, physical exams, cognitive tests, and movement measurements. Additionally, the study seeks to develop a registry of characterized patients and collect biospecimens for laboratory research to explore the molecular pathways and genetic factors associated with these disorders.

Why it matters

Who can join: the full rules

* 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.

Where it's running

• National Institutes of Health Clinical Center
  Bethesda, Maryland, United States Recruiting

Study contacts

• Principal investigator: Justin Y Kwan, M.D. — National Institute of Neurological Disorders and Stroke (NINDS)
• Study coordinator: Carol H Hoffman
• Email: carol.hoffman@nih.gov
• Phone: (301) 451-1229

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.