What is the Neonatal Diabetes Registry?
The Neonatal Diabetes Registry is 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).
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.
Participation in the Neonatal Diabetes Registry is voluntary and there is no charge to participate. The Registry staff follows all HIPAA rules to protect your personal health information.
What is the purpose of the Neonatal Diabetes Registry?
Through this research, we hope to learn more about the number of people who have neonatal diabetes, why and how it happens, and how best to treat it.
Only very recently has it been discovered that patients with neonatal diabetes may have certain genetic differences that may affect the type of treatment they receive. A few studies have shown that many neonatal diabetics have a change in their DNA (the genetic information or “code” that is present in all cells in your body) that can be identified by laboratory testing. It is still unknown how many patients with neonatal diabetes will have such genetic differences and whether these will affect how their disease might be treated.
Who can join the Neonatal Diabetes Registry?
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 Neonatal Diabetes Registry.
How can I learn more about the Neonatal 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 firstname.lastname@example.org.
How can I join the Neonatal Diabetes Registry?
If you or your child were diagnosed with diabetes under the age of 12 months, and you are interested in joining the Neonatal Diabetes Registry:
1. Review CONSENT DOCUMENTS.
2. Complete our SECURE ONLINE REGISTRATION FORM.
After registering, a 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 was diagnosed with diabetes under the age of 12 months, please direct the family to this website so they may consider participating. Please contact us if you have any questions about any patients you have with known or suspected monogenic diabetes.