April 2023 Monogenic Diabetes Newsletter

Dear Monogenic Diabetes Registry Community,

We hope you and your families are doing well. As we look forward to spring/summer, we wanted to reach out and thank you for your continued participation in the Monogenic Diabetes Registry. Whether it’s completing an annual follow-up survey, updating your contact information, or referring other family members with diabetes, your involvement is truly the fuel for our studies.

We hope you enjoy this issue of the Monogenic Diabetes Newsletter.

Monogenic Diabetes Participant Portal

Last summer we launched our new Participant Portal! The Monogenic Diabetes Participant Portal is a convenient way for people to access and complete surveys, view previously completed surveys, and upload documents for the study team to see. If you are interested in learning more about the Portal, you can email our team.

Monogenic Diabetes Website

Our website recently got a brand-new look! These improvements will make it easier for you to view vital information about monogenic diabetes and our current research.

Check out the new website at monogenicdiabetes.org.

Visit Our Website

Navigating the Everyday | A Conversation about Living with KNCJ11 AND ABCC8 Related Diabetes

On November 29, 2022 our team hosted a free,virtual event to address mental health and social challenges associated with KCNJ11 and ABCC8-related diabetes. Topics for this event included an overview of how ABCC8 and KCNJ11 variants affect the brain, tools for parents and families, and practical tips for young adults. There was also time for a live Q&A session with our experts. Thank you to all who attended!

Event recording can be found here.

Discussion Groups

We offer discussion groups for participants with genetic testing that shows they have GCK-MODY, KCNJ11- or ABCC8-related neonatal diabetes, or 6q24-related neonatal diabetes. These email-based discussion groups are a place for patients/parents and physicians/diabetes providers to discuss various aspects of these conditions. If you’re interested in joining a discussion group, please email monogenicdiabetes@uchicago.edu for more information.

Submit Artwork for the Cover of Diabetes Care

If diabetes has had an impact on your life, whether you have diabetes or care for someone who has diabetes, please see this opportunity from the American Diabetes Association to submit artwork for publication on the cover of an issue of Diabetes Care.

Learn more here. If you submit artwork, please let us know at monogenicdiabetes@uchicago.edu!

Registry by the Numbers

Over 2,100 families with over 1,200 confirmed Monogenic Diabetes diagnoses are currently enrolled, making this the largest Monogenic Diabetes Registry in the United States. Our Registry participants make the research we do possible – so thank you to all who participate.

If you or someone you know may have monogenic diabetes and is not currently enrolled in the Registry, they can contact our team at monogenicdiabetes@uchicago.edu.

Let's Get Social

One of the best ways to keep up with the Kovler Diabetes Center is to connect with us on social media. If you haven’t already, follow us on Facebook, Instagram and Twitter for up-to-date information on events, education and more!