I attended a support group this month and the topic was clinical trials. It was great to hear the how’s and why’s trials are set the way they are.
I got to share a lot due to the number of trials I have been in and many in the group had no idea how tough it can be to get in to one. So the group presenting went to me for added insight to studies. And if I could, I’d like to share.
First remember each one will have different criteria to be allowed to participate. Some are pretty easy and some are very, very hard to get in. Drug studies have a lot more criteria and they can push many out. It can be a small enzyme in your blood that might push you out. Something we would never think about but if itin the criteria and you have it, you’re out.
My last study had a hard time finding people because if you were producing any insulin, you were out. And many of us still produce a little so if you do, it’s a no go.
Than if you clear criteria, all questions answered, all labs are good, all other tests are good, you get to read the paperwork. And read it you must and should. You need to know what you are getting into. Drugs you may or may not be getting, tests they will be doing and how often, changes in protocol, visits when, where and how often, the list is huge. And you must understand what is required from you. The biggest one for many and oh so important is paperwork. All of these studies are trying to get approved by the FDA and that means paperwork. They need records and reports to submit. So if you hate logging, hate paperwork etc, make sure you can meet whatever requirements they need. One study, everything was logged into a tablet. Sounds great except the tablet was horrible. I would have preferred paper log to fighting with the darn tablet. Some are super easy and it’s just recording insulin doses. Some are tedious and you have to report every low, last meal, what you used to treat low, how long it lasted and when it was over. (Always laughed at that one. Obliviously it was treated, I’m putting the info in tablet do you really need to know when it was over?)
And while you can drop out at any time, you must remember if you do, it puts everything back further. And sometimes they change things as you go through based on info coming out from the study.
I must say, I have learned so much from my trials and it is the best when you have many doctors watching everything. I am picking the brains of some top endocrinologist in research. And I can ask them anything. Right now I have 3 endocrinologist overseeing this study plus my own endo! So very cool.
So I am hoping some of you can find that study that will work for you and I hope we continue to find volunteers. The only way we can find answers is to ask the questions and put them to the test.
Do I think there will be a cure? Yes, yes I do. We have come so far in my 47 years. Do I think I will see it? I hope but the research wheels turn very slowly. But I do see our lives being much easier. I do see some treatment options coming that could make our lives almost “normal “! So I hope my little chat can get some a little more at ease for a study. But remember,it is work but the pay off is great.
We can figure this out!
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I assume you are talking about T1. I would agree. There will be a cure eventually.
I don’t believe that for T2. We just need to keep finding better and better ways to maintain control. So it goes…
Judith in Portland
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Yes, I agree that type 1 will probably be cured before type 2 but still feel it’s a long way off. But I figure I can’t complain how long it is taking if I’m not helping where I can.
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Anybody have an idea why I am never allowed to participate in studies and the like? Is it just uncommon to be allowed to participate or am I getting disqualified due to epilepsy? There was a really cool one recently where they gave type 1s low blood sugar and measured brain response. I really wanted to be in that one. No response, as usual. Doesn’t seem fair.
