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If you have never participated in a T1D research study that tested out a potential new device, drug, process, or other intervention, what stops you from participating? Select all that apply to you.
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Apparently at 74 Iāve outlived my usefulness.
I am in my early 70’s. I’ve dealt with Type 1 diabetes since 1976. Wish someone would conduct a trial on geriatric diabetics who have been dealing with it a long time….in my case, quite successfully, I think….although aging presents additional challenges.
All of the studies that I have seen exclude anyone 65 years old, or older. Also, years ago I was put off about my personal information being shared with many possible unknown interested parties. And, I had no control over where my personal information would end up.
Two reasons I don’t participate: 1) I live too far from the testing centers; 2) I don’t meet the criteria to be selected to participate. This is probably the reason why most T1D’s do not participate, they do not meet the criteria.
Many of the studies are for recently diagnosed T1. Since adults are usually initially misdiagnosed, they miss the window when they could benefit. Organizations such as the ADA and the JDRF, as well as this one, need to do a better job ensuring that ALL doctors accept that adults can develop T1.
I signed up for an islet cell trial but was denied because Iām O+ā¦. Never told why that matters.
I have participated in several [many?] studies over the years; some that resulted in very significant new life-saving advances. Some research projects for which I volunteered my body were unable to advance significant results.
I will venture to say, that all PwD reading this have used, or are currently, and benefitted from my willingness to contribute the one body I have. Yes, I am now midway through my seventh decade living with diabetes.
You are a hero. Thank you š
I have participated in the past but my spouse worries about possible side effects and asked me not to participate again. So out of respect and love for my family I no longer participate.
In the past I have tried quasi-off label use of SGLT2 inhibitors. I have looked for trials of C-peptide, and am interested in other possibilities such as amylin. No one wanted me for islet cell transplant studies, but I was more than willing.
I have participated in studies in the past.
But most of the ones I hear about now want patients with higher A1c. So, I selected N/A, but I guess I should have selected the choice about exclusion requirements.
Currently in my first study! Previously, if I met criteria I was too far away. Iām hoping zoom technology will change that!
I have participated in studies including the clinical trial for Lantus insulin and the Joslin Medalist studies. I’m still interested and willing but at 75, after 67 years of life with T1D, the researchers are no longer interested.
Hah! the researchers should be more interested in those of us with T1D longevity! Especially since many of us diagnosed as children or in youth or as young adults are living long lives with T1D – well into our 60, 70, and 80s and some beyond that!
I am of the opinion, based on personal experience and clinical observation, that T1 PWDs who are mindful about self-care habits and lifestyle choices are much healthier than people who don’t have a chronic endocrine dysfunction like insulin deficiency to rule their lives. I am in better health and have outlived many Baby Boomer friends and contemporaries because of what living with T1D has taught me. I consider it a blessing in disguise!
I agree ladies.. 69/90 years.. They tell me I’m too old.
Surveyed but never got chosen to participate.
I marked “Other” but should have marked “I typically meet the exclusion criteria…” My age (83) is the culprit.
Mostly I guess because of my age, I guess, according to the answers above. Have had T1 since 1966 and am turning 66 later this year. I’d always like to hear about new products to use.
I participated in an early closed loop trial in the hospital and multiple blood draw studies. The JDRF recently sent out a communication that said 80% of T1D clinical trials are delayed or fail due to a lack of volunteers. Joining a clinical trial is a way to be an active participant in the quest for better T1D treatments and that long-awaited cure.
You can search for clinical trials that may be a good match for you on clinicaltrials.gov.
The JDRF also has this handy tool that let’s you search for T1D trials based on age, target location, miles willing to be travel, etc:
https://www.jdrf.org/impact/research/clinical-trials/
I was diagnosed at age 65 based on annual blood work. This is new, not just undiagnosed for years. But studies never include those who are “older.” Our metabolism is different, chronic conditions of aging may appear, etc.
How can we be treated properly and manage our condition/disease if we aren’t of interest to anyone.
I do not live close enough to major cities. I usually met the criteria up until I passed 60 years old. My major reason for not participating is that I am caregiving a very elderly relative now on Hospice. I cannot travel away for the clinicals nor can I risk being ill. My husband also has health problems, so it’s unlikely I will participate in the near future.