help determine why a person develops amyotrophic lateral sclerosis (ALS) and related motor
neuron diseases (MND) and why their symptoms present and progress with a particular pattern.
Study participants meeting all of the following criteria will be eligible for enrollment in
1. Men or women of any race or ethnicity aged 18 or older
2. Diagnosis of familial or sporadic ALS (definite, probable, or possible according to El
Escorial Criteria, Appendix 1), or those with primary lateral sclerosis or progressive
bulbar/muscular atrophy forms of motor neuron disease. All-comers with ALS/MND should
be enrolled without regard to familial vs sporadic or gene mutation status (i.e.
participants with known gene mutations should still be enrolled), or phenotype.
3. Capable of providing informed consent and following study procedures (in the case that
a subject lacks the ability to provide informed consent, informed consent will be
sought from the subject’s surrogate representative).
4. Willing to return to clinic site (or another participating center) for follow-up care.
Study participants meeting any of the following criteria during screening evaluation will
be excluded from enrolling in GTAC:
1. Invasive ventilation (i.e. tracheostomy) in place.
2. Non-invasive ventilation dependent (defined as >22 hours per day)
4. Known Human Immunodeficiency Virus (HIV) , chronic Hepatitis B, or Hepatitis C
(because cells will be frozen down for future cell line generation).
- Cedar Sinai Medical Center, Los Angeles, California, United States, 90048