Monogenic Diabetes Registry

What is the Monogenic Diabetes Registry?

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

The Neonatal Diabetes Registry was the first national registry for neonatal diabetes in the United States. It was developed by the University of Chicago under the direction of Siri Atma Greeley, M.D., Ph.D. and has been sponsored by the Juvenile Diabetes Research Foundation (JDRF) and the American Diabetes Association (ADA).

We are interested in helping to correctly diagnose:

  • Anyone diagnosed with diabetes under the age of 12 months (1 year), and especially those diagnosed before 6 months of age, are likely to have monogenic neonatal diabetes rather than type 1 diabetes. Their diabetes may be associated with complications not usually found in type 1 diabetes, including learning and developmental problems. They may also respond to treatments other than insulin, including sulfonylureas, which are pills used to treat certain types of diabetes.
  • People with monogenic diabetes that began after 12 months of age, sometimes called “maturity-onset diabetes of the young” or MODY. Some people with MODY may respond to treatments other than insulin, including sulfonylureas.

What is the purpose of the Monogenic Diabetes Registry?

Through this research, we hope to learn more about the number of people who have monogenic diabetes, why and how it happens, and how best to treat it.

Anyone diagnosed with diabetes under the age of 12 months (1 year), and especially those diagnosed before 6 months of age, are likely to have monogenic neonatal diabetes rather than type 1 diabetes. Their diabetes may be associated with complications not usually found in type 1 diabetes, including learning and developmental problems. They may also respond to treatments other than insulin, including sulfonylureas, which are pills used to treat certain types of diabetes.

Who can join the Monogenic Diabetes 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.

Do you or your child have diabetes that was first diagnosed under the age of 12 months, even if it later went away (i.e. it was transient or temporary diabetes)? If YES, and you are interested in participating, you may be eligible to join the Monogenic Diabetes Registry.

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 and consider signing up for a screening call.

Participation in the Monogenic Diabetes Registry is voluntary and there is no charge to participate. The Registry staff follows all HIPAA rules to protect your personal health information.

How can I learn more about the Monogenic Diabetes Registry?

Please read the CONSENT DOCUMENTS to learn more about our research.

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

How do I join the Monogenic Diabetes Registry?

If you meet inclusion criteria (or you are unsure if you meet inclusion criteria) or if you or your child were diagnosed with diabetes under the age of 12 months, and you are interested in joining the Registry:

1. Review the CONSENT DOCUMENTS.

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.