Investigating Complex Neurodegenerative Disorders Related to Amyotrophic Lateral Sclerosis and Frontotemporal Dementia
Study Purpose:
Objectives
The primary objective is to screen patients who are referred with a diagnosis of frontotemporal dementia, motor neuron disorder, or related adult-onset neurodegenerative disorder to assess patient eligibility for ongoing protocols. The secondary objective is to develop and maintain a registry of characterized patients who may be eligible for future trials. An exploratory objective is to obtain biospecimens from clinically characterized patients to carry out laboratory-based studies aimed at understanding the molecular pathways and genetic overlap between these neurodegenerative disorders.
Study population
Adults referred with clinical diagnoses of frontotemporal dementia, motor neuron disorder, or related adult-onset neurodegenerative disorder.
Design
Participants will all undergo diagnostic screening tests, a standard battery of tests to measure cognitive and motor function, and blood for clinical testing and research. Additional diagnostic and research testing, including magnetic resonance imaging, electromyography, neuropsychological testing, lumbar puncture, and skin biopsy will be obtained in selected patients.
Outcome measures
Patients will be screened for eligibility for current research protocol or entered into a registry future research protocols
Disease:
Amyotrophic Lateral Sclerosis (ALS), Familial ALS, Sporadic ALS, Primary Lateral Sclerosis (PLS),Study Type:
Observational StudyStudy Category:
Study Status:
EnrollingPhase:
Not ApplicableStudy Chair(s)/Principal Investigator(s):
Mary Kay Floeter, M.D., National Institute of Neurological Disorders and Stroke (NINDS)
Clinicaltrials.gov ID (11 digit #):
NCT03225144Neals Affiliated?
NoCoordinating Center Contact Information
National Institutes of Health Clinical CenterCarol H. Hoffman / .(JavaScript must be enabled to view this email address) / 301-451-1229
.(JavaScript must be enabled to view this email address) Bethesda, Maryland 20892 United States
Full Study Summary:
Objectives
The primary objective is to screen patients who are referred with a diagnosis of frontotemporal dementia, motor neuron disorder, or related adult-onset neurodegenerative disorder to assess patient eligibility for ongoing protocols. The secondary objective is to develop and maintain a registry of characterized patients who may be eligible for future trials. An exploratory objective is to obtain biospecimens from clinically characterized patients to carry out laboratory-based studies aimed at understanding the molecular pathways and genetic overlap between these neurodegenerative disorders.
Study population
Adults referred with clinical diagnoses of frontotemporal dementia, motor neuron disorder, or related adult-onset neurodegenerative disorder.
Design
Participants will all undergo diagnostic screening tests, a standard battery of tests to measure cognitive and motor function, and blood for clinical testing and research. Additional diagnostic and research testing, including magnetic resonance imaging, electromyography, neuropsychological testing, lumbar puncture, and skin biopsy will be obtained in selected patients.
Outcome measures
Patients will be screened for eligibility for current research protocol or entered into a registry future research protocols