Newly diagnosed and starting clinical trial

Hi all. I’m a newly diagnosed 42 year old. What I am interested in knowing is what kind of experience people have had with clinical trials. My approach is, I’m relatively healthy, I’m not a doctor, but I can be a guinea pig. Have people had good experiences? Is it worthwhile? How far do you travel? Any insights are appreciated. Thanks!

Hi Hannah,
… and welcome to this world of living productively, actively, happy and healthy.
I’ve now gone beyond 60 active years living with diabetes and have learned that there isn’t anything I can’t do - yes, I’ve managed T1D to fit my lifestyle.

Clinical trials. Over the years I’ve participated in many and as result I was on the cutting edge of diabetes management. Trials I’ve been in include laser eye therapy for retinopathy starting in 1966 and now I may be the longest living person with laser surgery; glycosylated hemoglobin in the early 1970’s - now called Hb A1c; studies on anemic incidence; as a precursor to the DCCT study; and the list goes on.

I often brose the web searching for additional studies and I’m on the list of available candidates - most of the studies currently would require me to live in certain geographic locations, not in Florida. I was fortunate in my younger days to live near Boston and I was a patient of the Joslin Diabetes Center.

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Thanks Dennis for your reply. It is encouraging to hear how much you are able to contribute to making treatment better and, hopefully, finding a cure. Your story is inspiring, I am encouraged to participate myself.

@Dennis “Happy” lifestyle

I have never participated in clinical trials, but I work as a coordinator and study nurse in women’s health clinical research. I cannot speak for our participants, but I believe its very beneficial. You have another set of eyes looking at your medical record and health, and in research no stone is left unturned. If there is anything wrong with you, it will be discovered in a research trial. I feel that a lot of the participants at our site look forward to their appointments because we listen, and they can vent. You will have homework and some trials can be time consuming, but improvements in the process are being made everyday, making it easier for participants. I wish I could enroll my daughter in a trial, but nothing is available near us.

Update: Since my diagnosis in August, I have found a clinical trial and am currently participating in a drug based trial. It is fantastic. Like you say, I look forward to the thorough exams targeted to my condition and I am receiving all sorts of information like which antibodies are present and how much pancreatic function I have remaining…I would highly recommend people to participate in trials as they are able. The more participation we have, the sooner we can find a cure!