Where can I learn more about monogenic diabetes?
Do I have to join the registry to learn more about monogenic diabetes?
No. We encourage patients to join our registry, but we are happy to answer any questions regarding monogenic diabetes.
Why should I join the monogenic diabetes registry?
Your participation will help researches understand more about genetic forms of diabetes, including how many people are affected, what treatment seems best for each different genetic type, and what other medical problems might occur due to gene mutations.
How can I get genetic testing for monogenic diabetes?
Testing can be arranged by your doctor for the most of the types of monogenic diabetes. We regularly are contacted to ask for advice on which genes to request for testing. In our studies, a limited amount of genetic testing is performed on a research basis.
What are the benefits to getting a genetic diagnosis?
A genetic diagnosis may alter treatment, help predict future health concerns and may allow for informed family planning.
Do I have to travel to Chicago if I take part in the research?
No. Most of our studies can be done through online questionnaires and over the phone. Saliva samples are often sufficient to allow research genetic testing to be performed.
Can my doctor contact the team?
We encourage clinicians to contact us with questions about monogenic diabetes.
How is monogenic diabetes inherited?
We all receive a copy of our genes from each parent. Sometimes mutations in genes can occur spontaneously. Most forms of monogenic diabetes require only one gene copy to be mutated. Other forms of monogenic diabetes require a mutation in both copies. For details about specific genes click here.
What studies are being done into monogenic diabetes?
Please click here to learn about some of the studies being performed here in Chicago.
How much does research genetic testing cost?
We perform genetic testing for some participants in our studies. The genetic testing is performed on a research basis and there is no cost for participants in our studies.
Who should have genetic testing?
Genetic testing is recommended for any child diagnosed with diabetes under 1 year of age and anyone who has suspected monogenic diabetes. A few key features we see in patients with monogenic diabetes include but are not limited to, persistently elevated fasting blood sugars, 2-3 linear generations of diabetes diagnosed under the age of 30, sensitivity to sulfonylurea, negative diabetes autoantibody testing, and low insulin requirements. It is important to review your holistic medical and family history with your doctor before exploring genetic testing.
When will my research-based genetic testing results become available?
Our research-based genetic testing is dependent on funding that becomes available. Therefore, we are unable to provide a guaranteed time frame on when genetic testing results will be available. However, we would be happy to provide you with an update on your sample. Please contact our study coordinator here for more information.
Can I have a copy of my genetic report?
Our study protocol does not allow us to send genetic reports to participants. We will securely send a report to the healthcare provider you list in your consent forms. Should you or your doctor have any questions after reviewing the report we would be happy to answer them.
How do I refer family/friends to the Registry?
Please refer any family or friends interested in learning more about our studies to our website. If they are interested in speaking with a team member, please have them complete a registration form here.