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If you have never participated in a diabetes research study, what stops you from participating? Select all that apply to you.
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I’d recommend a study for everyone, probably saved my life (or at least my sanity). Called my endocrinologist about glucose out of control seemingly overnight. After changing prescriptions several times I asked about insulin but he said I was too old to be TYPE1, had more weight to lose. On the Atkins diet (the original, before bars and shakes) lost the last 25 pounds and found medical trials for TYPE 2 out of control. Walking in the doc said I didn’t belong there, losing muscle mass and at least 25-30 pounds underweight (dropped from 255 to 148): C-peptides were tested and for antibodies, determined I was a TYPE 1, although 3 years diet/exercise controlled. Left those trials insulin pens and orders to gain 25-30 lbs.
Learned so much how the endocrine system works, how a glucose meter works, and how specific meds work (for a TYPE 2). Learned more than from any other doctor, including the 5 endocrinologists. Thus I’m happy with a general practitioner who generally doesn’t see TYPE 1s. If given the chance look them up. I volunteer but am too healthy?
WOW!!!
I did participate in a research study in the 1990’s
when I lived close to the university. Also I was seeing an endocrinologist regularly for the first time in 58 years. Unfortunately with the demise of the Canadian Diabetic Association (CDA) approximately 7 or 8 years ago all lifetime contact with the association was lost for the majority of all diabetics in western Canada unless you lived in Vancouver. All participation in the CDA was immediately stopped. I started as a CDA volunteer in 1963 ( my youngest sister had been insulin dependant since 1958) and participated in several cities in BC, AB and the Yukon during my career. Today if you happen to hear about diabetes presentations, seminars or other activities like an excellent speaker or something you are generally shunned if you enquire about participating in local meetings, support groups and even fund raisers. It would need to be a unique topic before I would participate again.
I don’t participate in just diabetes research studies. Now participating in ACT study by Univ. Wash. (Seattle) and Kaiser Permanente to find factors (diet, exercise, health conditions, social isolation, etc) leading to or preventing dementia. Already benefitting from some tentative preliminary results. Estate will certainly benefit from zero funeral costs since I’m donating body to medical research.
Never yet had opportunity!
I failed to qualify for a major Eli Lilly Alzheimer study because I could only remember 1 out of 10 items they directed me to memorize. You needed to remember at least 2 to qualify.
Now what was I saying?
I practice naming all the felines I can, all the canines I can, naming at least 5 tools, at least 5 kitchen items, at least 5 types of dogs, etc before I go in for my periodic exam. I also practice doing squats till my butt just touches a chair, then rising with my arms folded across my chest. And I practice standing on one leg. Whether you are accepted or not, aren’t these good habits?
I have participated in the Joslin Medalist Program & Study for many years. You don’t have to live close for this research since they provide hotels and flights to Boston. A person has to have had diabetes for at least 50 years to qualify for this research. When we die they take certain body organs for further research.
I checked the exclusion criteria, cuz that’s what seems to happen %90+ of the time, though I’ve filled out a few study questionnaires online.
Me too. I also think that perhaps my A1C disqualifies me (usually 5.4-5.8)
I donated my DNA for a study of diabetes complications a few years ago and was a subject in several other studies through my endo. I seem to be too old now for most studies, but I would probably participate in other studies if I could, depending on the nature of the study. I have benefitted greatly from past diabetes research and it seems only fair to do my part.
Since I also have MS, I worry about drug interactions and messing with what currently is working.
Participating in clinical research is a great way for those of us living with T1D to play an active role in bringing important new advances and that long awaited cure closer to reality. I have participated in several blood collection studies and an early automated pump system study where I was hooked up to 2 sensors and two laptops and monitored by staff in the hospital for 3 days. So exciting that we now have several different versions of these systems available for us to use in real life (and thankfully without living to lug around a laptop!). That’s progress!
For those interested in searching for clinical trial opportunities, the JDRF has a handy, online clinical trial connector tool. It allows you to anonymously enter a few basic details like age, sex, zip code and how many miles you’re willing to travel and provides a list of clinical studies you may be a candidate for and links to learn more about them. If you wish, you can provide your email address and they’ll email you when new studies open that match your criteria. I’ll paste the link below in the reply 👇
Link to JDRF Clinical Trial Connector:
https://www.jdrf.org/impact/research/clinical-trials/#Find%20a%20Clinical%20Trial%20That%20Fits%20You
A1C usually too low or other health problems usually disqualify me. 🙁
I participated in one study about 7 years ago. It was for the T:slim X2, but I didn’t know that then. I had 2 problems with the University that was running the test. They had me on the new pump and I was staying sequestered for 3 days. The first night I went low. They got up and offered me a snack but would not bolis for it. The snack was about 20 to 25 g of carbs. I warned them I would go high.
I woke up the next morning with a SG of 300 they were alarmed and stopped my participation.
At the exit interview the attending Dr told me I was pregnant. When a man gets the blood test that he may be pregnant, that may mean testicular cancer. Of course I was alarmed. I saw my GP and he reviewed the labs. He was concerned the charts were switched.
He did another test that showed no signs of pregnancy or cancer.
So long story short, I am more leary of trials that can be screwed up like mine was. I’m sure it was a one off, but what about the pregnant female?
OMG !!!
I have participated in medical research: the third stage clinical trial for Lantus insulin and as a Joslin Medalist. I ‘m very willing to continue, but apparently have now aged out of the specific T1 studies I’ve applied for . Research is how medical science moves forward. I lack the financial resources to donate, but can offer myself as a participant to help make progress.
I was able to participate in the testing of Tandem’s CONTROL IQ, but the had to wait more than a year for the FDA to approve its daily use.
Too old, t1d for too long, A1c fine, never seem to equalify. Also don’t hear about them.
This helps educate myself
A long time ago when I hit 50 years of T1D, I notified “Joslin” .. I did NOT want their Medal…. I thought they may want to know what I did for 50 years not having any D problems… They wanted to know the names of all my Doctors for proof… My past Doctors were all Dead!!!
When caregiving for others and/or holding a full-time job, participation in research studies is a challenge. Especially, when I live in an area where research studies are hundreds/thousands miles away. In today’s world, distance should not be a limiting factor in participation.