I took part in a clinical trial. Have you?

Posted by Erin @Erinmfs, May 30, 2019

Several years ago, I volunteered for a research study at the NIH. It was an important experience! I wanted to share how to go about it. Check the NIH website periodicaly as they post new study opportunities. Follow the application procedures. It was all expenses paid for me, they paid my flight to the Washington DC area, and I was given a place to stay. It was neat 🙂

https://www.cc.nih.gov/about/news/newsletter/2019/spring/story-10.html

if you search http://www.nih.gov for ‘Join a Study’, many opportunities are displayed
https://search.nih.gov/search?utf8=%E2%9C%93&affiliate=nih&query=join+a+study&commit=Search

@2011panc

I volunteered for a post pancreas transplant research project measuring the effectiveness of the transplant. The project is not over yet. It checks mainly activity and blood sugars by several avenues over a period of time in intervals. I wanted to join this research for several reasons: (1) pancreas transplants are still so rare that many people still believe they are not done; (2) results of pancreas transplants are still unpredictable, with some people having completely reliable function and many still requiring frequent glucose testing and injections; (3) my road has not been smooth and I believe my experiences have a great deal to offer to researchers for future transplant patients; (4) the research is neither invasive nor difficult; and (5) expenses are paid. I have already learned that I do not have the BRCA gene and feel some relief from that knowledge. I am open to questions. Thank you for this opportunity to share.

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@2011panc, how long is the trial period? In other words, how many years post transplant do they monitor you? Does this additional monitoring give you comfort? Was testing for the CRCA gene part of this same trial or genetic testing that you did for a different reason?

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@colleenyoung

@2011panc, how long is the trial period? In other words, how many years post transplant do they monitor you? Does this additional monitoring give you comfort? Was testing for the CRCA gene part of this same trial or genetic testing that you did for a different reason?

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@colleenyoung The trial requires you to be more than one year post transplant. Readings are taken twice, one year apart. The additional testing is, to me, minimal. The testing for the BRCA gene was part of this trial, otherwise I would not have had it done because I have no other indications of a need for this testing. Not all testing results will be automatically released to me, but I am sure the BRCA gene test will be provided to all participants because it is such an important test in relation to successful treatments. I cannot say that the testing gives me comfort, per se. Knowing my particular and diverse medical history encouraged me to pursue this trial, as I believe that I have much to offer in many areas and for many people. I do not expect changes for myself, but hope to provide a better outcome for other people that may need to address any of the same issues with which I have dealt or am not dealing.

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@2011panc

@colleenyoung The trial requires you to be more than one year post transplant. Readings are taken twice, one year apart. The additional testing is, to me, minimal. The testing for the BRCA gene was part of this trial, otherwise I would not have had it done because I have no other indications of a need for this testing. Not all testing results will be automatically released to me, but I am sure the BRCA gene test will be provided to all participants because it is such an important test in relation to successful treatments. I cannot say that the testing gives me comfort, per se. Knowing my particular and diverse medical history encouraged me to pursue this trial, as I believe that I have much to offer in many areas and for many people. I do not expect changes for myself, but hope to provide a better outcome for other people that may need to address any of the same issues with which I have dealt or am not dealing.

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@2011panc, you hit on something there. Some clinical trials provide potential benefit to the study participants as in the case of @burrkay's wife. For Erin @user_chdb5e8ac the benefit of finding a treatment center (Mayo) and a diagnosis was a tangential benefit of participation. However, some trials offer no immediate benefit to the participants. Rather the data collected is invaluable to advance science and benefit future patients. It sounds like that has been a rewarding experience for you.

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@colleenyoung

@burrkay, thanks for persisting after losing your original post. I really appreciate the indepth experience you shared as do many other members, I'm sure.

I'm confused by one issue. You mention that the center nearest you was not participating in the trial My Pathways, however, your local oncologist was able to get off-label permission to administer the trial protocol, correct? Does this mean your wife's data is not included in the study?

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Thanks Colleen…
It is important for members to know that access to a clinical trial may be “closed” in your state…as was the case for us.
However, at the time the study was available in Florida. So the process required application for the study in Florida. We did that through our Mayo oncologist in Florida.
Once approved, our local oncologist wrote a “letter of compassion” to the RX manufacturer…asking for permission to administer the protocols locally.
Otherwise, we would have been required to travel 6 hrs each way every 3 weeks for the therapy!
The manufacturer gave a positive response in very short order!

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Hello All:

As many of you have been discussing your own experiences with clinical trials and/or your interest in participating in a clinical trial I thought that you would find this Mayo Clinic article interesting and perhaps helpful. Here is the link,
https://intheloop.mayoclinic.org/2019/07/09/clinical-trials-key-to-lung-cancer-patients-survival/?

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