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Check out the Sweet Kids Network

Discussion in 'Parents of Children with Type 1' started by cadesmom, Nov 14, 2008.

  1. cadesmom

    cadesmom Approved members

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    Diabetech has just released the Sweet Kids Network, click on the link below and register. It will go through different phases, the first project is to geomap type 1 D by location along with date of diagnosis as an initial research project to look at the role of location in the onset of D. There are currently several hundred kids registered mostly in Texas. In Phase 2 you will be invited to share additional information to help accelerate research projects and clinical trials.

    It only takes a minuite to sign up, I hope everyone will join me in this very important project.
    https://mygluco.com/sweetkidsnetworkregistryphase1
     
  2. WestinsMom

    WestinsMom Approved members

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    Is there anyway to see the map of where everyone is located?

    I went surfing the site and saw my name in the local article that mentioned glucomon. :) How funny!
     
  3. AlisonKS

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    registered ;)
     
  4. twicker1

    twicker1 Approved members

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    I registered! How do you know about where people are located? I didn't see any maps or anything. Is it in the email?
     
  5. cadesmom

    cadesmom Approved members

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    The GIS mapping tool is being developed, there will be a patient de-identified version of the data by zip code on the web after the first of the year. For reasons of privacy they will not publish the map with the actual street addresses although the research project will perform its analysis at that level looking for trends by time and proximity of people diagnosed with type 1
     
  6. Colleen

    Colleen Approved members

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    I registered.
     
  7. kevin@diabetech.net

    kevin@diabetech.net Approved members

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    Federal Support to Expand Sweet Kids

    Along with our partner Driscoll Children's Health Plan, we just got a $750k 3yr grant to expand the functionality of the Sweet Kids Network designed to accelerate growth in the community and to create innovative uses of the shared data. Phase 2 of the program launches on Jan 1st 2010. Stay tuned.
     
  8. Connie(BC)Type 1

    Connie(BC)Type 1 Approved members

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    Hope it's ok for Adults with Type 1 to register, most don't recognise Type 1 continues to adulthood
     
  9. Ellen

    Ellen Senior Member

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    How does this differ or connect with the announcement by JDRF of a voluntary registry?
     
  10. kevin@diabetech.net

    kevin@diabetech.net Approved members

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    Good question Ellen.

    There are actually several 'registries' that one can become involved with. The newest one is JDRF's, the one at mygluco.com and also a focused effort by the folks at TrialX and several more...

    As part of figuring out how they differ that would be a good thing for a resource like CWD to figure out and post for anyone to make it easier to understand.

    One aspect of the registry that we support is that we need everyone - even people who are not already diagnosed with a disease. If we want to track down those things that contribute to someone becoming diagnosed it would make sense that we need data before you get diabetes, not just after.

    The federal grant will give us a big push toward enrolling as many people as we can within a 7 county area. This concentration will generate a lot of data within a small area. The name of this new free community health network is "Healthy Families of South Texas" which will have a special set of local services defined by the local leaders. While it is so much more than a website the future online destination for this community is http://hfstx.org and I expect phase 1 to go live sometime in November followed by phase 2 in Jan/Feb.

    Similar projects are currently underway addressing other communities with a common platform in North Texas and elsewhere.

    The details behind how all of the various sources of patient data might share data are very complex and ultimately depend on the privacy policies of each source with regard to respecting patient privacy rights.
     

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