Healthy Volunteers
healthy people welcome
at San Diego, California and other locations
study started
completion around



The goals of this study are: (1) to better understand the relationship between the phenotype and genotype of amyotrophic lateral sclerosis (ALS) and related diseases, including primary lateral sclerosis (PLS), hereditary spastic paraplegia (HSP), progressive muscular atrophy (PMA), and frontotemporal dementia (FTD); and (2) to develop biomarkers that might be useful in aiding therapy development for this group of disorders.


This study will recruit patients with ALS, ALS-FTD, PLS, HSP, and PMA, with a focus on incident cases. Patients with both familial and sporadic forms of these diseases will be enrolled and followed longitudinally using a standardized set of evaluations. Biological samples (blood, urine, CSF) will be collected from all study participants, and will be used for biomarker discovery and validation. Family members of affected individuals may also be enrolled and asked to contribute DNA and biological samples to aid genetic and biomarker discovery.


Amyotrophic Lateral Sclerosis, Frontotemporal Dementia, Primary Lateral Sclerosis, Hereditary Spastic Paraplegia, Progressive Muscular Atrophy, Multisystem Proteinopathy, natural history, biomarkers, phenotype, genotype, Motor Neuron Disease, Muscular Atrophy, Primary Progressive Aphasia, Pick Disease of the Brain, Paraplegia, Spinal Muscular Atrophy, Sclerosis, Affected, Unaffected


You can join if…

  • Member of at least one of the following categories:
    1. Individuals with a clinical diagnosis of ALS or a related disorder, including FTD, HSP, PLS, PMA and MSP (sporadic or familial).
    2. Family member of an enrolled affected individual.
  • Able and willing to comply with relevant procedures.

You CAN'T join if...

  • Affected with end or late stage disease.
  • A condition or situation which, in the PI's opinion, could confound the study finding or may interfere significantly with the individual's participation and compliance with the study protocol. This includes (but is not limited to) neurological, psychological and/or medical conditions.


  • University of California San Diego (UCSD)
    San Diego California 92093 United States
  • Stanford University
    Palo Alto California 94304 United States


accepting new patients by invitation only
Start Date
Completion Date
University of Miami
Study Type
Expecting 700 study participants
Last Updated