Type 1 writer looking for individuals involved in DCCT data collection

Hi, all ~

I’m beginning work on my third novel (first one came out in '06; second is in the late editing stage), in which I’m finally going to take advantage of my first-hand knowledge of Type 1 diabetes. I have a character who, if the plot-line works, is going to be involved somehow with data collecting/compiling for the Diabetes Control and Complications Trial (he’s not a doctor but has a science/math degree — his specific function in the trial to be determined after I’ve learned more). I have no direct experience with the DCCT — it had been going for a few years when I was first diagnosed in '87 — so I’m looking for any information that any of you (Trial staff or former participants) may have.

I’m not, of course, looking for confidential information about patients — more just procedural details (what sort of information was collected … in what ways was the data collected/stored/reported to overseeing doctors/analyzed? etc.) — but if you’d prefer to keep your comments confidential, a private message, either to my “Tu” inbox or to hburt@telus.net, would be great.

I should also mention that I’m not aiming to represent all people with diabetes in this project. It’s not so much a novel about diabetes as it is a novel about other, more abstract things that happens to have a couple of characters with diabetes!

Thanks!

Heather Burt

Wow, Heather! What a great idea! I wish I could help you with this project, but I was not diagnosed until March 1993, just 6 months before the DCCT came out. I hope you are able to find the perspectives you are looking for and I hope the best for your novel!

I was/am one of those NOT invited to join …I can’t recall, were there only 1044 participants ?? I was thinking, if you googled some of your answers maybe met ??
I hope for you , that you will do as well as with Novel( number 1 ???) : Adam’s Peak .
All the Best to our BC, Canada writer :slight_smile:

Thanks, Nel and Angela! It’s still early days for this book, but I’m excited about it (and being on TU certainly helps with the excitement … not to mention helping with frustrations over my non-fictional insurance battles, BG conundrums etc. etc.).

According to the Wikipedia stats on the DCCT (for what those are worth!), there were apparently only 1,441 participants (29 different centres in the States and Canada). I would have expected the number to be higher, but, on the other hand, all of those participants were Type 1 … and we are in the minority!

I really got my numbers off ; can I blame it on a typo ?? I do recall now 1,441 !
CDA maybe able to verify the stats…contact Franca.Lattanzio@diabetes.ca …she is at the Vancouver office
( and please say HI to her from me ) …I have the 1.800 number at my finger tips , not the one you can call from Vancouver …sorry

I was impressed that you got the number so close! Thanks for the contact info … I shall compile some questions and pass on your regards when I contact Franca.