I just found the following website / organization, that gathers data for various studies regarding folks with T1D, summarized in their newsletters.
They also mention Glu - anyone familiar with that ?
The newsletters include results/charts showing age groups / % using pumps, % meeting A1C goals, etc. I found it very interesting.
Pump usage and average A1C
T1D Exchange home
I was one of the beta testers for Glu. There really seems to be two parts to this thing. There is the Type 1 Exchange registry which includes Type 1 patient records from enrolled clinics. Something I read from 2012 talked about 25,000 patients from 67 clinics. They’re analyzing data from these patients.
Glu the website is under the same Leona Helmsley grant. There are occasional questionnaires there that might be used in research and you try to keep your profile up to date. But there is no way that the website can be scientific because it’s totally self-selected. I personally don’t care for the website and hardly ever go there. It’s a hodge-podge of old discussions, shouts (think tweets), daily questions, and an occasional article. They are definitely trying hard to make it something substantial, but I have never found it worth my time to hang out there.
As far as I can tell, the Type 1 Exchange and the Glu website are two totally different things (as they should be). They give the impression that the website is part of some huge Type 1 study, but I don’t see how you can have any scientific validity from people who chose to report their A1c’s occasionally or from those of us who only visit the site sporadically.
I signed up for Glu as a beta tester too but, since there was little content, I didn't spend much time there. I have gone back more recently and seen that there is content but I agree w/ Laddie that it seems to be more along the line of twitter-esque rah rah stuff than the more substantive dialogues I find here so I haven't spent all that much time.
Thanks for the additional info.
It does seem confusing if they are 1 or 2 different things, so thanks for confirming that. I found where it said they stopped accepting more people for the Exchange, and have 26000. And when I checked again, I found where it said that data was collected via the clinics they were associated with, rather than self-reporting, so the charts I found might be somewhat more realistic as representative of the general population of T1D.
Cannot answer their intent seems interesting, I'd want to read anybody's privacy policies very, very carefully. Can anybody access the information? Will they sell it to someone? Will they share it? Significant questions
Hi MegaMinxX et al,
My name is Bill, and I am one of the Community Managers of Glu (myglu.org)long time member of TuD as well.
If you have any questions or anyone else does feel free to reach out to me. Glu is a
growing online diabetes community with the purpose to accelerate research and outcomes of T1D.
TuDiabetes is actually part of Glu's/T1D Exchange Partner Co-Op. Along with InsulinIndependence, Children With Diabetes, College Diabetes Network and many other great diabetes resources.
Stuart here is a link to some of the policies of Glu. https://myglu.org/user_agreements
Hopefully you will find the answers to your questions there.
Glu is one of 4 parts to the T1D Exchange.
#1 "Clinic Network" of 100+ clinicians, 69 clinics, and 100k+ Type 1s
#2 "Clinic Registry" 26,000+ type 1 patients involved in a 150 parameter logitudinal study with annual updates.
#3 "Biobank" 6,000+ blood samples.
#4 Glu - myglu.org 5,800+ members, real worl data, and online reseach
Glu launched openly a little over 6 months ago. Soon there will be more research/survey information coming back to the community. Information that was collected via our online surveys and questions we ask on Glu.
Best of Luck,