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Rare Forms of Diabetes: Chance to Participate in a New Study

By Dr. Irl Hirsch

The RADIANT study aims to define unusual forms of diabetes, to help diagnose and treat these conditions. RADIANT is recruiting people who have been diagnosed with diabetes but don’t fit the usual characteristics of type 1 or type 2 diabetes.

Have you or a family member ever visited a diabetes healthcare professional and after a few minutes heard them say, “I’m not exactly sure what type of diabetes you have?” As it turns out, this is not uncommon. While the majority of people with diabetes broadly fit in the buckets of type 1 diabetes (autoimmune) or type 2 diabetes, there are other forms that can affect people.

Many types of diabetes remain unknown – we call these “atypical diabetes.” The National Institute of Health (NIH) has funded a study called RADIANT (Rare and Atypical DIAbetes NeTwork). Its goal is to discover the rare and atypical forms of diabetes that have not yet been described. These forms are not well understood, are difficult to diagnose, and most important, may be difficult to treat. RADIANT hopes to develop diagnostic tests to identify people with rare forms of diabetes as well as treatments for these conditions.

Although they are rare, we have had knowledge of other types of diabetes for years. For example, people who require prednisone or other long-term steroids for asthma or for a transplant may develop diabetes related to the steroid medication. This is called “steroid-induced diabetes.” Other medications can also result in diabetes. We also know that rare endocrine conditions, such as a growth hormone-secreting tumor (acromegaly) or a tumor making too much cortisol (Cushing’s disease), can cause diabetes.

Other less-common forms of diabetes are seen in an endocrinologist’s office. For example, some people may need to get their pancreas removed (pancreatectomy) for medical reasons. Not surprising, if someone is missing most – or all – of their pancreas (where insulin is made), diabetes will develop. Certain medical conditions where the pancreas is damaged, like cystic fibrosis or inflammation from alcohol ingestion, can also result in diabetes.

Since its first description decades ago, we have learned about genetic forms of diabetes that are related to a gene mutation that results in unusual insulin secretion. Collectively these conditions are called, “maturity onset diabetes of the young” (MODY), and there is a growing number of these known gene mutations. People with MODY have neither type 1 nor type 2 diabetes and often do not require insulin. Depending on the type of MODY, therapy options differ.

All of these are examples of unusual forms of diabetes. Researchers currently suspect that many more forms of atypical diabetes may be related to specific gene mutations that cause unusual insulin secretion or make someone more resistant to insulin.

The RADIANT study is recruiting people who have been diagnosed with diabetes but who do not fit into the usual criteria of type 1 or type 2. Many people with atypical diabetes have been told by their healthcare teams that they have “type 1.5” diabetes. The fact is, there really is no specific type 1.5 diabetes, and researchers want to define these unusual forms to improve treatment options and prevention. To learn more and see if you meet the criteria for the study, click here.

About Irl

Dr. Irl Hirsch, MD is a professor of medicine in the division of Metabolism, Endocrinology, and Nutrition at the University of Washington and a Principal Investigator for a RADIANT clinical center located at the University of Washington. He is well known for his research on insulin and glycemic variability, among other topics. Dr. Hirsch has type 1 diabetes.