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MODY Registry

What is the MODY Registry?

The MODY Registry (also known as the Monogenic Diabetes Registry) has been developed by the University of Chicago under the direction of Louis Philipson, MD, PhD.

We are interested in helping to correctly diagnose people with monogenic diabetes that began after 12 months of age, sometimes called “maturity-onset diabetes of the young” or MODY. The purpose of the registry is to follow these people over time to learn more about monogenic forms of diabetes.

If you, your child, or family member has or may have a monogenic form of diabetes and you are interested in participating in our study, please review the inclusion criteria below.

 

Who can join the MODY Registry?

Any adult or child with a known genetic cause of diabetes may join the MODY Registry. If you suspect a genetic cause of diabetes in yourself or a family member, you are eligible to join the MODY Registry if you meet inclusion criteria.

Inclusion Criteria: Diagnosis of diabetes after 12 months of age and before 50 years of age AND at least one of the following criteria:

  • Presumed diagnosis of type 1 diabetes with one or more of these features atypical of type 1 diabetes
    • Negative autoantibodies (no antibodies to GAD 65, insulin, islet cell, or ICA-512/IA-2)
    • Detectable c-peptide >1 year after diagnosis
    • Adequate diabetes control on unusually small doses of insulin and/or no significant illness with missed insulin doses >1 year after diagnosis
  • Presumed diagnosis of type 2 diabetes with one or more of these features atypical of type 2 diabetes
    • Diagnosis before age 25 years, especially in ethnicities with a low prevalence of type 2 diabetes (non-Hispanic white, Asian, South-east Asian)
    • Not significantly overweight (body mass index <30 kg/m2)
    • No signs of insulin resistance on examination or blood tests
  • Incidental diagnosis of mild but persistent high blood sugar that does not worsen over time
  • Diabetes in 3 or more successive generations of family members with a pattern consistent with a mutated gene being passed from a parent to their children
  • Known genetic cause of diabetes in you or your family

 

How can I learn more about the MODY Registry?

Please view the MODY REGISTRY CONSENT FORM to learn more about our research study.

You may also contact Registry staff at (773) 702-0829 or email at monogenicdiabetes@uchicago.edu.

 

How do I join the MODY Registry?

If you meet inclusion criteria (or you are unsure if you meet inclusion criteria) and you would like to be contacted about joining the Registry:

1. Review the MODY REGISTRY CONSENT FORM.

2. Complete our SECURE ONLINE REGISTRATION FORM.

After registering at the link above, a Registry staff member will contact you to discuss your eligibility. Note that you must register at the website above and provide valid contact information in order to be contacted about our studies.

 

Physicians: If you are currently treating a patient who has or who you suspect may have monogenic diabetes, direct them here to review consent documentation and consider participating in our study. If your patient completes the consent process, you will receive an email invitation to provide more information.