7 Responses

  1. Tweets that mention » An Open National Data Registry for Type 1 Diabetes - DiabetesMine: the all things diabetes blog -- Topsy.com

    [...] This post was mentioned on Twitter by GingerVieira. GingerVieira said: RT @diabetesmine "An Open National Data Registry for Type 1 Diabetes – DiabetesMine: the all things diabetes blog" ( http://bit.ly/drdZC8 ) [...]

  2. Rachel
    Rachel July 12, 2010 at 7:39 am | | Reply

    This is fantastic news about the registry. Very needed, indeed!

  3. Scott S
    Scott S July 12, 2010 at 10:50 am | | Reply

    Hmmmmm, I find this development interesting. It is important, and as long as patients’ inclusion in the registry is optional, with a clear means to be excluded if they wish, then I believe it could be very valuable, especially since neither the CDC nor the NIH/NIDDK have anything other than best ‘guesstimates’ on the incidence of type 1, its prevalence, growth, etc. The one area I really feel has little overall value is that of metabolic control. Every drug company under the sun, and a majority of endocrinologists are fixated on glycemic control to the point of all but ignoring so many other critical needs of this patient group. But the idea of an exchange would be very useful and should probably be pursued at a higher level (notably within the U.S. Department of Health and Human Services) to establish guidelines and encourage greater participation.

  4. Scott K. Johnson
    Scott K. Johnson July 28, 2010 at 8:37 pm | | Reply

    I still can’t believe that nobody knows how many cases of type 1 diabetes exist in the US, much less the world. That just seems crazy.

  5. Cassie
    Cassie February 7, 2011 at 12:05 pm | | Reply

    I am someone who signed up for the registry and it is completely voluntary. In fact, because it’s part of human research I had to sign a consent which means that people cant be signed up against their will. I hope that this exchange can answer some basic questions about diabetes so that legislators can make more imformed decisions about healthcare and insurance laws. Plus it may lead to better diabetes research in the future.

  6. Andrew Phillips
    Andrew Phillips March 18, 2011 at 3:39 am | | Reply

    Thanks, Amy. I did a little more searching for information on this registry and came across this: http://www1.avera.org/amck/Research/researchpatients/t1dregistry.aspx

    It seems like it’s the place to sign up for it. Seems like a good idea to me.

    This whole social media gimmick might actually do some good. ;~)

  7. Diabetes Daycare: Family Survey - Type 1 Chronicle

    [...] Diabetes Mine has an article about a national registry effort being spearheaded by the Helmsley Charitable Trust [...]

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