What is MDRAP?
The Monogenic Diabetes Research and Advocacy Project was co-founded in 2016 by Toni Pollin, MS, PhD, and Jennifer Rice, MBA, to promote the correct diagnosis of types of diabetes caused by genetic mutations known as monogenic types of diabetes. Dr. Pollin is a genetic researcher and genetic counselor. Ms. Rice is a patient diagnosed with a type of monogenic diabetes called maturity-onset diabetes of the young. Monogenic diabetes is estimated to account for 1-2% of all diabetes, or approximately 500,000 people in the United States and several million people in the world. However, recent research indicates that only about five percent of people with monogenic diabetes in the United States receive a correct diagnosis, with the remainder being misdiagnosed with the more well-known type 1 and type 2 diabetes.
A correct diagnosis is necessary for proper treatment and optimal health outcomes and also helps ensure that family members receive the correct diagnosis. For example, Ms. Rice was treated with insulin injections and an insulin pump for 6 years because of a misdiagnosis of type 1 diabetes, but she has recently been diagnosed with maturity-onset diabetes of the young type 2 (MODY2), also known as glucokinase MODY, and now knows that treatment is not necessary for her particular condition to prevent complications.
How can I learn more about monogenic diabetes?
For further information about monogenic and other lesser-known forms of diabetes, please see Chapter 4 of The Genetic Landscape of Diabetes at the National Institutes of Health website:
How can I get involved?
We want to reverse the current underdiagnosis of monogenic diabetes. We are looking for people who are interested in this effort. Whether you are a patient or family member of a patient with monogenic diabetes or suspected monogenic diabetes, a healthcare provider, or any other organization or individual interested in joining this effort, please fill out this form and we will be in touch.