A Study of Amyotrophic Lateral Sclerosis and Related Neurodegenerative Diseases

What we are studying

The purpose of this study is to identify the links that exist between the disease phenotype (phenotype refers to observable signs and symptoms) and the disease genotype (genotype refers to your genetic information). We also want to identify biomarkers (indicator of the disease that can easily be measured) of ALS and related diseases.

Who is Eligible

  • All Genders
  • Races:
    • White
    • African American
    • Asian
    • American Indian or Alaska Native
    • Native Hawaiian or Pacific Islander
    • Other
  • All Ethnicities
  • Ages 18+

Eligibility Criteria

  • 1) Diagnosed with ALS or A Related Disease (Primary Participant)
  • 2) Must Have a Family Member Affected with ALS or A Related Disease Who Is Already Taking Part in The Study (Secondary Participant)

What is involved

  • Measurement of Your Vital Signs
  • Collect Pedigree Information
  • Collection of Biological Samples Including Blood and Urine
  • Genetic Counseling for Release of Your Genetic Test Results
  • Completion of Questionnaires About Your Symptoms and Diagnosis
  • Completion of Questionnaires About Your Daily Activities and Quality of Life
  • Completion of Environmental Questionnaires (Optional Procedure)
  • Examination of Your Neurological Function
  • Measurement of Strength of Your Breathing Muscles
  • Screening of Your Neuropsychological Function
  • Extended Evaluation of Your Neuropsychological Function
  • Evaluation of Your Disease Severity and Progression
  • Lumbar Puncture/Collection of CSF (Optional Procedure)
  • Skin Biopsy (Optional Procedure)
  • Update of Information About Your Health
  • Current Medications and Possible Side Effects
  • Assessment of Your Survival


If you have ALS or a related disorder, we will give you $40 for each of the five scheduled in person study visits you complete to cover travel related expenses. If you are asked to come to the clinic only to perform the neuropsychological testing, we will

Contact Information

Study Coordinator
Mozhdeh Marandi
Principal Investigator
James Caress

Disclaimer: The information on this website is for general informational purposes only and SHOULD NOT be relied upon as a substitute for sound professional medical advice, evaluation or care from your physician or other qualified health care provider.