The Monogenic Diabetes Registry is made up of many individuals – some have known monogenic causes and some have not had any genetic testing yet. We appreciate all of you who have participated in our saliva collection study. When we receive your saliva sample, one of our team members isolates your DNA and we store that sample in a special freezer until the opportunity arises to do something with it. Because we are only a research lab (not a commercial genetic testing service), all of the genetic testing we do is heavily dependent on funding.
We try to emphasize at the time of enrollment that we can’t provide you with a timeline as to if/when we will be able to test your saliva sample. We wish we could test every sample as soon as we receive them, but because of our funding restrictions, this is not possible for us. All of the saliva samples we have will be kept safely stored until the opportunity arises to perform testing.
If testing is done on your sample and shows a significant finding, we will let you know and convey results directly to your physician. If you have recently changed physicians, please update your contact information to let us know.
Commercial genetic testing
Commercial genetic testing can be ordered through your physician. Your blood will be drawn and shipped to a special laboratory that completes neonatal/MODY genetic testing. Some insurance companies are willing to pay for the testing and others are not – it seems to be a case-by-case situation. We always recommend getting pre-authorization from your insurance company before ordering any type of genetic testing.
If you or your health care provider would like assistance in writing a letter requesting pre-authorization for testing, please contact us.
The Genetics Services at the University of Chicago, a certified clinical laboratory, offers comprehensive monogenic diabetes testing. You can browse their website here: http://dnatesting.uchicago.edu