MODY Registry
Registry for monogenic diabetes diagnosed after 12 months of age
The MODY 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 with onset after 12 months of age, sometimes referred to as maturity onset diabetes of the young (MODY), and to follow them over time to learn more about monogenic forms of diabetes. If you or your child or family member has or may have a monogenic form of diabetes and you are interested in participating in our monogenic registry study, please review the inclusion criteria below. If you meet these inclusion criteria, please DOWNLOAD OUR CONSENT DOCUMENTS to learn more about our research study.
If you are interesting in participating, please complete our secure online registration form.
Inclusion Criteria: Diagnosis of diabetes after 12 months of age and before 50 years of age and at least oneof 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
If you would like to be contacted about joining the Registry, please complete our secure online registration form.
If you do not qualify for participation in this research study, we thank you for your interest and invite you to learn more about monogenic diabetes by exploring our website, or by contacting us for more information.
If you are a physician who is currently treating a patient who has or may have monogenic diabetes that was diagnosed after the age of 12 months, please direct the family to this website so they may review the inclusion criteria listed below and consider participating in our study. If your patient completes the consent process, you will receive an email invitation to provide more information.
