Personal experience with trials

Tagged: clinical trials, Friedreich's Ataxia, participate

This topic has 6 replies, 5 voices, and was last updated 3 years, 4 months ago by Matt Lafleur.

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- January 19, 2019 at 3:10 pm #11244
  
  Frankie Perazzola
  Keymaster
  
  If you have ever participated in a clinical trial, what was your experience like? Good or bad?
- January 22, 2019 at 8:20 pm #11334
  
  Clifton
  Participant
  
  I am currently on a trial in florida but i live in texas. The dr’s and everyone is really nice. They recommend local food to try. Flights are so so but it is a little tiring but all the folk in gainsville are really cool.
  - January 22, 2019 at 8:34 pm #11337
    
    Matt Lafleur
    Member
    
    I really need to participate in more. Are the people over there nice? Is it a difficult thing- like do they wake you up at all hours to take your vitals? Do you have to eat the hospital food? Do you see other FAers while there? Sorry for all the questions; I am curious!
    - February 2, 2019 at 6:33 pm #11665
      
      Shandra
      Participant
      
      Matt you should sign up for the research in Gainesville!! The FA Biomarkers study is still recruiting: https://clinicaltrials.gov/ct2/show/NCT02497534
      
      Also I live in Gainesville so it’s a good excuse to see my friends 🙂
    - February 2, 2019 at 11:27 pm #11674
      
      Matt Lafleur
      Member
      
      Here is me showing how ooooooooooooold I am:
      I was diagnosed with FA before the gene was identified. I actually signed up for this trial and they need documentation of a genetic test. I don’t have one. I need to get off my butt and get one done.
- January 30, 2019 at 2:10 pm #11596
  
  Naeem
  Participant
  
  How tooo participate in a trial given that my hospital and whole my country Tunisia or neigbours countries don’t participate in trials
  - January 30, 2019 at 9:58 pm #11601
    
    Matt Lafleur
    Member
    
    Hey Naeem,
    Thanks for your interest in clinical trials. Just keep checking to see if there is ever one you can reasonably get to. Unttl that happens, just keep on reading the latest scientific news, and know that you are appreciated!
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