Help us better understand the role genes play in ALS

Recruiting patients

Study Name
CReATe Consortium: Phenotype, Genotype, & Biomarkers (PGB) Study
Michael Benatar, MD, PhD
Study Type
Observational, Longitudinal, Prospective, Biomarker
Eligible Population
  • Individuals with a clinical diagnosis of ALS or a related disorder
  • Family member of an enrolled affected individual.
Study Purpose/Goals

(1) To better understand the relationship between the phenotype and genotype of ALS and related diseases, including PLS, HSP, PMA, and FTD. (2) To develop biomarkers that might be useful in aiding therapy development for this group of disorders.

(3)  To explore the gene-environment relationship in ALS and related disorders.

  • 5 half-day study visits in Miami over a 2-year period
    • Family and medical history review
    • Genetic counseling (with option whether or not to learn the results)
    • Genetic Testing (with choice to learn results or remain blinded)
    • Collect blood, urine, and CSF fluid (CSF optional)
    • Neurological exam
    • Neuropsychological exam
    • Breathing testing
    • Epidemiological review
    • Surveys
  • Annual phone interview

Join our family - together, we can change the course of this disease.

Join our family

Together, we can change the course of this disease.

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