Clinical Trial experiences

Berriosa1234

I am getting ready to enter into a clinical trial with NYU Langone Transplant Institute to lower my antibodies to hopefully improve my odds of getting a new kidney in the coming months. Has anyone been through a clinical trial? what was your experience?

thanks

Alex

dlatchison

I haven't personally been a part of any trials, but I feel like learning more about your experience would be great for a blog (or something similar) for TransplantLyfe if you're up for sharing as you go through it! What do you think, @AliEm14?

AliEm14

@dlatchison We're on the same page! I think that would be amazing to live on the Transplantlyfe website.

I've never participated in any clinical trials specific to transplant (being from the rare disease world I feel like I was a guinea pig for a lot of things though) and would love to follow this story.

@Jdboogy53 were you a part of any trials? I know with your program at Hopkins they're doing a lot of cutting edge research there!

Jdboogy53

Thanks for including me in his discussion. Hopkins is indeed a major teaching hospital so we are strongly encourage to participate in clinician trials. So I have, but I would like to tell you about them.

All my trials were not paid except one that was a total of $120 over 6 visits.

1. Was the Delta Study with NIH tracking alcoholic livers, if we relapsed and all factors about our first year (medication types, levels, feelings, emotions and of course PETH testing).
2. Separate was the drug study. The above study only tested for alcohol use so you could choose to participate in a drug one as well. This is to also look for trends or usage. So it was in conjunction with the emotional therapy part but I had to come in for some strict drug testing ( even measured opioid usage).
3. A post kidney genetic transplant study for one year to see how my match progressed. This was a no brainer to me, involved extra blood draws but this furthers the knowledge on genetic matching. We were able to at least do those draws at the same time as regular labs.
4. I’m currently in a cool EPOC study of immunocompromised individuals which is following my levels of antibodies produced from the CoVid shot (or Covid as well last fall) for one year. This is extra work for me with a large blood draw and a separate lab but I believe it’s important work and knowledge we need.

For the most part to be honest I’m disqualified from several studies as a dual donor dual transplant (double transplants from the same donor have less variability). So I do what I can!

Nancysueh

I'm in a NYU/John Hopkins study which lowers the immune suppressent drugs after 3 months if you have a good match for a kidney. Mine was from a deceased donor. I had my transplant Aug 29 2024.