Liver — TransplantLyfe


Clinical Trials

Transplant Patient
March 1, 2022 in Liver

Ok friends, come at me. Bring the good, the bad and the ugly. I want to know about your experiences with clinical trials.

My doctor called me yesterday expressing interest in me joining a clinical trial for a new antirejection drug. It's already being used in Europe, but the trials are currently being done for it in Canada. I go for more testing on March 7 to make sure I fit all the criteria, and if I do then the plan is to start right away.

If you've ever been part of a clinical trial, what was your experience like? What can I expect? Anything you'd recommend, recommend against? I want to know it all

1 - 3 of 3 Replies

  • KarinExpert
    Transplant Patient

    I have never been part of one but have run them as a CMO. I would be so interested in hearing from others how they felt about being part of trials

    March 2, 2022
  • ShelbycreatesTransplant Patient

    I was in a clinical trial to diagnose my kidney disease. I got genetic testing for Alport Syndrome. It came back positive, but I never got the records from the clinic although I tried really hard to. They gave me the results over the phone and never sent it to me. I was at a hotel out of town the day they gave the results. I know which collagen defect I have, but I can't remember if he said it was dominant or recessive because I was in a hotel lobby when he told me and I knew I'd be getting the results mailed to me. I am 99% sure he said recessive, but it would be nice to have it in writing! So my advice is to make sure you get any medical records that you need from them as quickly as possible. I kept asking and waiting and I wish I would have been more insistent at the beginning. Best of luck to you and I hope you have great results!

    March 4, 2022
  • ChefAmandaTransplant Patient

    I was part of one the second year of transplant. I was only 16 years old and I don’t remember what it was for. All I remember is the bad reaction I had to the medication and was in the hospital for 10 days.

    March 8, 2022
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