Pre-fALS: The Pre-Symptomatic Familial ALS Study

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Principal Investigators: Michael Benatar, MD, PhD and Joanne Wuu, ScM (UMiami)

genetic-chartThis is a longitudinal study of people who are at risk for developing familial amyotrophic lateral sclerosis (fALS), with the specific goal of improving our understanding of the pre-symptomatic phase of fALS. Participation in the study involves undergoing genetic testing with the option of whether or not to learn genetic test results. Individuals who have undergone genetic testing and can provide documentation of genetic test results may be eligible to participate. Undergoing genetic testing for this study requires that the genetic mutation responsible for ALS in the family be identified.

Eligible participants are invited to travel to the University of Miami every 12-24 months to undergo study procedures (e.g., MRI, neurological examination, environmental risk factors survey, collection of blood and urine samples, cognitive testing, etc.). Participants receive follow up calls every 3-4 months between study visits.

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CReATe PGB: Phenotype, Genotype, and Biomarkers

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Principal Investigator: Michael Benatar, MD, PhD

Site-PIs:

  • Michael Benatar, MD, PhD (University of Miami)
  • Richard Barohn, MD (Kansas University Medical Center)
  • John Ravits, MD (University of California San Diego)
  • Carlayne Jackson, MD (University of Texas Health Science Center San Antonio)
  • Jonathan Katz, MD (California Pacific Medical Center)
  • Andrea Swenson, MD (University of Iowa)
  • Ted Burns, MD (University of Virginia Health System)
  • Jaya Trivedi, MD (University of Texas Southwestern)
  • James Caress, MD (Wake Forrest University)
  • Eric Pioro, MD (Cleveland Clinic Ohio)
  • Rebecca Schule, MD (University of Tuebingen)

RDCRN logoThe CReATe Consortium, initiated and led by Dr. Michael Benatar, is a new member of the NIH’s Rare Disease Clinical Research Network (RDCRN). The scientific goals of CReATe PGB, the first study undertaken by the CReATe Consortium, are to better understand the relationship between phenotype and genotype in ALS and related disorders (including PLS, HSP, PMA, FTD and MSP); and to develop biomarkers that might be useful in aiding therapy development for this group of disorders. Each year CReATe will also fund 1-2 pilot biomarker discovery project(s) that will utilize biological samples collected from patients who are enrolled in PBG (or other research studies) through the CReATe consortium.

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CRiALS Biomarker

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Principal investigator: Michael Benatar, MD, PhD

Brain medicine mental health care concept as hands holding an open pill capsule releasing gears to a human head made of machine cog wheels as a symbol for the pharmaceutical science of neurology and the treatment of psychological illness.

The CRiALS Biomarker Study is aimed at increasing our knowledge of ALS and several other related neurological disorders, with the goal of identifying biomarkers related to therapy development. Research volunteers may participate in one or more procedures, including neurological examination, collection of biological samples, MRI, motor tasks, physiological and cognitive testing, and respiratory functions tests.

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CRiALS Genetics

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Principal investigator: Michael Benatar, MD, PhD

Interpreting Dna GelThe CRiALS Genetics study is aimed at increasing our understanding the genetic causes of ALS and related disorders; helping us to identify individuals who are at a genetic risk for developing these disease; and thereby to work towards developing new therapies for individuals with ALS and/or who are at risk for developing disease. Eligible participants submit a blood sample, which can be collected at our research site or remotely by mail. The sample collected is then sent for genetic testing. Results of genetic testing are only provided to affected individuals.

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