Ways to Get More Involved

We greatly appreciate your participation in the Monogenic Diabetes Registry! Itching to get more involved? See if you qualify for any of our ongoing studies below, update your contact information, or pass along our registration form to a friend or family member who might fit our eligibility criteria (link to ‘who should have genetic testing/where you can be tested’).


RECRUITING PARTICIPANTS DIAGNOSED UNDER 1 YEAR OF AGE AND UNAFFECTED SIBLINGS:

You/your child may be eligible if:

  • Diagnosed under 1 year of age with type 1 diabetes OR a permanent form of neonatal diabetes (INS, FOXP3, GATA6, PDX1, EIF2AK3 are all okay – KCNJ11 and ABCC8 are not eligible for this study)
  • Are currently ~4-20 years old
  • Unaffected, healthy siblings ages ~4-20 years old

We are currently recruiting these participants for a visit in Chicago, which will include:

  • Behavior/school surveys and parent-completed surveys on neuropsychology
  • Medical history surveys and medical record acquisition (looking at HbA1c, c-peptide, total daily dose of medications, height/weight)
  • In-person neuropsychological assessments (completing tasks and surveys with a trained pediatric development specialist)
  • Continuous glucose monitoring and modified mixed meal tolerance test
  • Quality of life surveys

To learn more, please contact Lisa Letourneau, Monogenic Diabetes Registry study coordinator at 773-702-0829 or email us at monogenicdiabetes@uchicago.edu.


RECRUITING KCNJ11 and ABCC8 PARTICIPANTS AND UNAFFECTED SIBLINGS:

If you or your child has KCNJ11- or ABCC8-related neonatal diabetes (and/or unaffected siblings) and you are interested in traveling to Chicago to participate in some research studies, we would be very interested in having you!

We are currently recruiting those with KCNJ11/unaffected siblings for:

  • Neuropsychiatric assessments for anyone of at least preschool age
  • Sleep studies for anyone of at least preschool age
  • MRIs for anyone at least 8 years old and able to sit still in an enclosed space for up to 1 hour

To learn more, please contact Lisa Letourneau, Monogenic Diabetes Registry study coordinator at 773-702-0829 or email us at monogenicdiabetes@uchicago.edu.


Recently moved? Changed phone numbers? Switched to a new doctor?

Update your contact information here (make sure to check the box at the top to indicate you are only updating your contact information): https://cri-app02.bsd.uchicago.edu/monogenics/registration_2013.aspx


Pass along information about our studies:

Have a family member or friend who might meet our eligibility criteria? Pass along our secure registration link: https://cri-app02.bsd.uchicago.edu/monogenics/registration_2013.aspx or have them call Lisa Letourneau, Study Coordinator, at 773-702-0829.