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I spoke to my case manager at the ALS Clinic in Miami this week. They are postponing the routine visits for the pre-fALS study due to COVID-19. However, for anyone in the study who thought that their symptoms were increasing or they are concerned about new symptoms, they are making appointments to address their concerns. The team, like other facilities, are working in shifts – some work for home, while others go into the office. It sounded like they are rotating and making sure that everything is sanitized and all of the necessary precautions were being taken. The folks at the ALS Clinic in Miami are amazing and so dedicated!
Have you heard from the clinics that you attend? Are they making any exceptions? Do you have concerns that need to be addressed immediately? Would you feel safe going to a clinic at this time?
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I’m in REFALS-ES study at USF in Tampa. My study “visits” are being done by phone. They do ask that before the phone visit that I get a medical professional to check my heart pulse rate. Kind of silly that can’t take it myself. The local ALS clinic here although closed was nice and did it for me with the staff they had in to take calls and email issues.
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