MODY Registry Gaining Momentum Across the U.S.

Graeme Bell, PhD, Siri Greeley, MD, PhD, Lou Philipson, MD, PhD and Rochelle Naylor, MD

Patients and physicians nationwide have been contacting the Kovler Diabetes Center to learn more about its growing registry of patients with MODY (Maturity Onset Diabetes of the Young), a form of monogenic diabetes.

Rochelle Naylor, MD, who co-manages this nationwide database, said the registry helps Kovler researchers better understand this rare form of diabetes. MODY is caused by mutations in several different genes important to the function of beta cells, tiny cells in the pancreas that produce insulin. Naylor noted that MODY is often misdiagnosed as type 1 or type 2 diabetes.

“We can see how different forms of MODY appear in families, follow patients over time, track their symptoms, and see which therapies work best for them,” Naylor said. “Our goal is to ‘capture’ a record of every MODY case in the United States. We like to aim big!”

Currently, the MODY registry includes patients from as far away as Alaska and California who have contacted Kovler to ask about enrolling or about receiving genetic testing.

MODY presents symptoms that often veer from the norm for type 1 or type 2. For example, a type 1 diabetic who generates a significant amount of insulin on her own years beyond diagnosis, or a type 2 diabetic who is not significantly overweight and shows no signs of insulin resistance, might actually have MODY.

“We review the patient’s entire case, and if there’s reason to believe it could be MODY, we enroll them in our registry. We often also carry out genetic testing through a separate study by collecting a saliva sample for DNA,” Naylor said. “We follow all people with suspected or confirmed MODY over the long term and set up ongoing communication with their physicians.”

A diagnosis of MODY might affect treatment. For example, some MODY patients fare better on oral medications, such as sulfonylureas, rather than insulin injections. One form of MODY generally requires no treatment at all. “It’s important to accurately diagnose the specific type of MODY someone has so that they can receive the most appropriate treatment,” Naylor said.

This year, Kovler researchers plan to test different drugs in patients with specific forms of MODY to see how well they respond to these medications.

“We also aim to understand more about each of the known genetic causes of MODY and hope to identify additional genes in which mutations can lead to MODY,” Naylor said. The MODY registry was launched by Naylor; Lou Philipson, MD, PhD, director of the Kovler Diabetes Center; Siri Greeley, MD, PhD; and researcher Graeme Bell, PhD, who identified four of the five known genes associated with MODY.

For details about the MODY registry, visit kovlerdiabetescenter.org/registry or contact Rochelle Naylor, MD, at rnaylor@peds.bsd.uchicago.edu or 773-834-5207.

This article was featured in the latest edition of Kovler Connection. Click here to read the issue in its entirity.

Announcing a New Program, “Picture Good Health”

Designing programs to improve diabetes care among Mexican-Americans has the potential to have a broad impact and to decrease the health disparities faced by this population.

Dr. Arshiya Baig, General Internist and Assistant Professor

Dr. Arshiya Baig and her research team are leading a project that is based in South Lawndale/Little Village, a Mexican-American neighborhood of Chicago. Little Village is a predominantly Mexican-American community that has a diabetes related mortality rate higher than the national average and higher than the average across Chicago. Since the church has an important role in many Latino cultures and families, working with churches to address diabetes is one method of tailoring diabetes programs to this community. Many church-based programs have shown promise in improving health outcomes among minority communities, but data on church-based programs for Latino populations are scarce.

Dr. Baig has partnered with two churches in Little Village: St. Agnes of Bohemia and Our Lady of Tepeyac. They have held focus groups at the churches and learned about the types of church-based diabetes programs community members desired. In 2009, Dr. Baig led the formation of the Little Village Community Advisory Board composed of community leaders and community members to assist the research team in designing an effective church-based diabetes program that incorporated existing local health care resources. Using the feedback from the focus groups and input from the Community Advisory Board, they designed: Picture Good Health/Imagínate una Buena Salud.

Picture Good Health is a bilingual church-based diabetes program. The program has eight weekly educational sessions that are held at one of the partner churches. The curriculum uses an innovative technique called “photovoice” where participants receive disposable digital cameras to document their lives with diabetes. These photos are then used in the class to guide a discussion on problem solving and provide training in self-empowerment. Participants also have access to exercise groups within the churches. The program also includes patient navigator service through Taller de Jose, a social service agency in Chicago that connects clients to resources within the community. The patient navigators assist participants in finding a local primary care physician.

The program is currently being piloted at the two partner churches to assess its impact on diabetes control. Dr. Baig and her team are currently recruiting adults with diabetes at churches in Little Village to enroll in this pilot program.

If you would like more information on Picture Good Health, please contact the study team at 773.702.0770.

Dr. Arshiya Baig
General Internist and Assistant Professor
The University of Chicago Department of Medicine