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Getting involved in a Study--What is it Like?

Discussion in 'MODY' started by doratheexplora, Dec 13, 2011.

  1. doratheexplora

    doratheexplora Approved members

    Jun 3, 2009
    Just contacted Univ. of Chicago/Monogenic Studies and they told me my son might be a good candidate for the study.

    I am worried because although he does meet a lot of criteria there is no one else in our family with diabetes. Would this rule out monogenic? or just some types of monogenic?

    Has anyone else done the study or one like it? What does it entail? Is it a lot of paperwork to get "approved"?
  2. Lotus

    Lotus New Member

    Jan 20, 2012
    We are in the Chicago MODY study

    We are doing a study through the university of chicago. I contacted them and told them I thought my daughter and I might have MODY and I'd be interested in more information about studies they are doing and possible inclusion in those studies.

    They responded by sending me a packet of information about the studies they were doing, what they were looking for, and what the inclusion criteria were to be enrolled in the study. After that I told them I was interested and thought I met the criteria for inclusion. I sent them my medical records, and did a phone interview. At the end of theinterview, I was told I met the criteria for inclusion. Basically, they are looking to weed out people who seem likely to be type 1 or 2 diabetics. They have limited funding and only want to study candidates who have a high likelyhood of being MODY.

    However, you should know. They have had our blood samples for over a year now and still no diagnosis. They told me it could take years, and sometimes, they never come back with anything. So this is not a quick path to figuring out what may be causing diabetes in your family. Its more to help further the cause of reasearch and since it costs nothing. I felt like I had nothing to lose but a lot to gain. If they did come back with a cause for what is causing diabetes in our family.
  3. Sjlnv

    Sjlnv New Member

    Jun 14, 2013
    My 10 yr old is also in the UIC mody study. We sent in our oral and blood samples in jan 2013. We have yet to hear anything(June 2013) but also understand that it is a study... My son was diagnosed with pancreatitis a yr and a half ago, and have had blood sugar and weight issues since. Every time something new pops up, our dr says sounds more and more like mody. I feel it is worth doing the study as my insurance won't cover the cost of testing.

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