for people ages 18-100 (full criteria)
healthy people welcome
at Los Angeles, California and other locations
study started
estimated completion



Creation of a large repository of induced pluripotent stem cells (iPSC), bio-fluid samples (blood and spinal fluid (optional)), and cell lines for ALS gene identification. This will be combined carefully with collected measures of the pattern of the symptoms people with ALS have and how these change over time. People with other motor neuron diseases and healthy controls will be included as comparisons

Official Title

Answer ALS -Creation of a Large Bio-repository of iPS Cells, Cell Lines, and Bio-fluid Samples, Combined With Clinical Information to Rapidly Advance Therapeutics That Could Treat ALS


Patients will have 5 study visits; screening, 3, 6, 9 and 12 months. There will be a one year post-participation follow-up period, during which they will receive an email or phone call interview once every 3 months. During the first year, samples will be collected, breathing, muscle strength, spasticity, general function and cognitive behavior will be assessed. Healthy controls will have 2 study visits during which blood samples will be collected and questionnaires given.


Amyotrophic Lateral Sclerosis Primary Lateral Sclerosis Flail Arm ALS Progressive Muscular Atrophy Monomelic Amyotrophy Motor Neuron Disease Asymptomatic ALS Gene Carriers Healthy Controls ALS stem cell biomarker disease progression Muscular Atrophy Muscular Atrophy, Spinal Sclerosis


You can join if…

Open to people ages 18-100

  • Participants with familial or sporadic ALS diagnosed as possible, laboratory-supported probable, probable or definite according to the World Federation of Neurology (WFN) El Escorial criteria, Primary Lateral Sclerosis Flail Arm ALS, Progressive Muscular Atrophy, Monomelic Amyotrophy, Motor Neuron Disease, Asymptomatic ALS Gene Carriers
  • Participants who are ages 18-100, inclusive.

You CAN'T join if...

  • Participants with Spinal-Bulbar Muscular Atrophy
  • Known diagnosis of HIV/AIDS, Hepatitis B, or Hepatitis C.


  • Cedars-Sinai Medical Center
    Los Angeles California 90048 United States
  • Texas Neurology
    Dallas Texas 75214 United States


in progress, not accepting new patients
Start Date
Completion Date
Johns Hopkins University
Study Type
Observational [Patient Registry]
Last Updated