About 20 years ago when I hit about 50 yrs T1d, I applied to Joslin and they wanted proof…. my Doctors were all dead…. Now I am 90 years OLD and they all say I am too old…. ?????
Sweet Charlie, the proof Joslin needed at the time I was accepted into the program was any doctor’s notes saying I was diabetic for ever how many years. My doctors were also dead ( T1 65 years) but I got some medical records from when my son was born in 1971 where the doctor had commented when I developed diabetes. That was all Joslin needed.
As long as it doesn’t require immune suppression drugs and I don’t need to travel for hours, I’m willing to consider most research opportunities.
I will signup for almost anything that I do not have to travel more than 100 miles to participate in.
I find that I am closed out of a vast majority of research studies because I am over 65 years old. Location is important. No immune suppression drugs (Covid 19). I would not participate in a study that would risk my health or life.
Gloria, your participation in the 50 year Medalist Program with Joslin is admirable! I went to the Syracuse, NY Joslin for many years, and don’t remember hearing of the study. I would have been interested if I knew about it.
So many reasons to want to contribute as a lab rat in diabetes research – so little trust remaining after the medical industry treatment of the COVID hoax. For me, I suspect I will never again trust the medical industry again after their dismal failure to currently or past choices to follow any even pretense of a medical scientific path with COVID. How low has our medical industry fallen?
Pauline M Reynolds
Transparency. I need clear information about the scientific foundation of the proposed research and the experimental design. I also need assurances that my privacy will be protected and that I will be informed about the results.
I need to see a significant level of transparency from the team doing the research including but not limited to study design, Phase 1 and 2 results, *all* FDA communications regarding the drug or device and finally providing access to the full report and data after the study is complete or stopped.
The literature is awash in the sewage of studies done on too few people to be significant and meaningless endpoints.
I have been participating in clinical trials for thirty years, starting with epilepsy as science is built on observation and needs participants in order to learn. I chose more than three reasons, but if I were to rank them:
1 Trust in the researchers or company handling the trial
2 Something else – please share in the comments (Being able to prevent or cure diabetes completely)
3 Contributing to research and helping other people with T1D
4 Potential for better diabetes management plan or individualized treatment
5 Potential for education/learning something new by being in the trial
Trust is the most important issue. Do they truly understand diabetes or are they stuck in thinking T1 is little kids and T2 is lifestyle? If their basic assumption is so ignorant, will they be interested in learning truths that may contradict their suppositions? This is why compensation is important. If you aren’t going to pay, be upfront about it. Otherwise, I expect the check to arrive in the mail. Don’t ask me to “donate ” it back. If you are lying to me about this, what other lies are you telling?
I am always interested in the future of diabetes equipment. The company’s that are developing iLet, Tidepool Loop, Tandem Control-IQ future offering. iLet looks like it could be a dramatic change to managing Diabetes. We’ll see.
Which of the following is important to you when considering whether you would be interested in participating in a research study involving a new medication or device? Select up to three reasons for participating or share more about what would impact your decision to participate in the comments. Cancel reply
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I am in the Joslin Center 50 Year Medalist Program. At the time I lived on Cape Cod so convenient for me to drive for the testing. Once I left MA Joslin paid for the air flight to return for more testing. Once I die they will get parts of my body for further research.