Research Database
Patient-centered adaptive clinical decision support for implementing precision medicine for maturity-onset diabetes of the young
Rochelle Naylor, M.D.
Institution:
University of Chicago
Grant Number:
7-22-ICTSPM-17
Type of Grant:
Clinical
Diabetes Type:
Monogenic Diabetes
Project Date:
-
Project Status:
active

Research Description

It can take more than a decade to translate findings from research studies into routine clinical practice. Some helpful tools that can support translating research findings into clinical care include guidelines and clinical decision support tools for healthcare providers. There is an initiative to implement precision medicine in diabetes. Currently, genetic forms of diabetes are the best example of the benefits of precision medicine in diabetes; however, studies show that precision treatment is not always implemented when it would be appropriate to do so. This project will leverage the unique insights of individuals and their diabetes care providers participating in the US Monogenic Diabetes Registry. These are individuals living with monogenic forms of diabetes who have experienced making decisions about treatment following genetic diagnosis. These participants will work with experts in monogenic diabetes and genetics to develop a patient-centered clinical decision support tool that will facilitate implementation of precision medicine following diabetes genetic diagnosis. This tool will be rigorously tested and modified to make sure it performs in an optimal manner. This study will also test this tool against not using it to determine if it will improve rates of diabetes precision medicine. Resolving gaps in precision treatment for monogenic diabetes will not only optimize outcomes in patients with these forms of diabetes, but will inform strategies for significantly more complex forms of diabetes, including type 1 and type 2 diabetes, in order to improve the health outcomes in people living with diabetes.

Research Profile

What area of diabetes research does your project cover? What role will this particular project play in preventing, treating and/or curing diabetes?

My project relates to precision medicine in monogenic diabetes. It seeks to develop a patient-centered clinical decision support tool to aid people living with diabetes and their diabetes care providers in shared decision making to act on positive monogenic diabetes genetic test results. This project will help people receive the best treatment for their type of diabetes which will help improve diabetes control and/or decrease diabetes treatment burden.

If a person with diabetes were to ask you how your project will help them in the future, how would you respond?

Precision medicine is recognized as an important way to improve the lives of people living with diabetes. Diabetes precision medicine means that we identify subgroups of diabetes and determine what the best prevention or treatment strategies are. If there is a person with diabetes who matches a specific subgroup, we can then adapt those best prevention or treatment strategies to their specific circumstances to optimize the benefits of treatment and minimize adverse effects. In monogenic forms of diabetes we are already able to use precision medicine because we can select the best treatment and management based on knowing which gene is affected. However, there are many instances in monogenic diabetes where precision treatment is not happening. This project is seeking to address that by developing a tool that will support people living with diabetes to know what type of treatment changes might be best for their type of diabetes and prepare them to discuss this with their diabetes care provider. This tool will also help diabetes care providers to understand how to best treat monogenic forms of diabetes, because many providers have limited or no experience with these uncommon forms of diabetes. Ultimately, this tool can help inform ways to support people living with non-monogenic forms of diabetes as well.

Why important for you, personally, to become involved in diabetes research? What role will this award play?

I have had a long-standing interest in diabetes predating my medical degree, related to the experience of many family members impacted by poorly controlled type 2 diabetes. Thus, I knew that as a clinical researcher, I would conduct diabetes research. I have spent my entire career in pediatric endocrinology focused on atypical forms of diabetes, including monogenic diabetes. I have had the opportunity to speak to so many people with monogenic forms of diabetes and the struggles and barriers they face to get genetic testing for monogenic diabetes or to receive precision medicine after a genetic diagnosis fuels the research questions that I pursue. This award will allow me to address repeated instances of inaction on positive monogenic diabetes test results, supporting both the person living with diabetes and their health care provider who may have limited knowledge of monogenic diabetes in a manner that is scalable and disseminatable, and that I expect will be able to be adapted to other areas of diabetes precision medicine.

In what direction do you see the future of diabetes research going?

I think better diabetes classification and improved ability to match diabetes subclasses with specific diabetes therapies will continue to be an important focus to improve diabetes outcomes. I also think that future diabetes research will help us to better assess and address the structural factors and social determinants of health to substantially reduce existing disparities in diabetes.