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    • #21386

      Hello Community Members,

      I just scheduled my 6 month clinic visit for the pre-fALS study at the University of Miami. It is a little intimidating going from every 12 to 24 months to every 6 months. It is partially because of the abnormalities in my tests, and I think (and hope) that since now I only live 2 hours away it is easy to make the trip. I also wonder if they are trying to keep closer tabs on the biomarkers since they believe they have identified an elevated protein in the blood just prior to the onset of significant ALS symptoms. I am still doing quarterly remote visits but they haven’t been able to send a phlebotomist out consistently for the blood draw. That may be due to the pandemic.

      I’ll be going April 28th. This time it is only one day of medical tests and no lumbar puncture. I guess they will only do that once a year, at least that’s what I am hoping.
      I’ll read up on things and go there with a list of questions. I’ll keep everyone posted. They usually send me more information a few weeks before my visit.

      If you have any questions about this study just let me know.

      Pre-fALS (Pre-symptomatic Familial ALS)

      Cheers to research!!


      From their website:
      Help us to understand when and how ALS begins
      Recruiting unaffected family members of genetic/familial ALSSTUDY NAMEPre-fALS (Pre-symptomatic Familial ALS)
      PI: Michael Benatar, MD, PhD and Joanne Wuu, ScM:STUDY TYPE:Observational, Longitudinal, Prospective, Biomarker
      Unaffected individuals with a family history of ALS and who may be at genetic risk for developing ALS
      Individuals living in the United States or Canada

      (a) Characterize the pre-symptomatic phase of ALS
      (b) Develop biomarkers that may be used to detect pre-symptomatic disease or even permit the prediction of if/when a gene mutation carrier will develop ALS (or FTD)
      (c) Prepare for a disease prevention trial.

      Genetic testing (with choice whether or not to learn the results)
      Genetic counseling
      3-day study visits in Miami every 12-24 months
      Family and medical history review
      Collect blood, urine, and CSF fluid (CSF optional)
      Neurological exam
      Full neuropsychological exam
      Breathing testing
      Fine motor skills testing
      Epidemiological review
      15-minute phone call check-ups every 3-4 months alternating with at-home remote visits consisting of questionnaires as well as blood and urine collection

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