NIH funds first nationwide network to study rare forms of diabetes

A nationwide study funded by the National Institutes of Health will seek to discover the cause of several unusual forms of diabetes. For years, doctors and researchers have been stymied by cases of diabetes that differ from known types. Through research efforts at 20 U.S. research institutions, the study aims to discover new forms of diabetes, understand what makes them different, and identify their causes.

The Rare and Atypical Diabetes Network(link is external), or RADIANT, plans to screen about 2,000 people with unknown or atypical forms of diabetes that do not fit the common features of type 1 and type 2 diabetes.

A person with atypical diabetes may be diagnosed and treated for type 1 or type 2 diabetes, but not have a history or signs consistent with their diagnosis. For example, they may be diagnosed and treated for type 2 diabetes but may not have any of the typical risk factors for this diagnosis, such as being overweight, having a family history of diabetes, or being diagnosed as an adult. Alternately, a person with atypical diabetes may respond differently than expected to the standard diabetes treatments.

“It’s extremely frustrating for people with atypical diabetes when their diabetes seems so different and difficult to manage,” said the study’s project scientist, Dr. Christine Lee of NIH’s National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). “Through RADIANT, we want to help patients and the broader healthcare community by finding and studying new types of diabetes to shed light on how and why diabetes can vary so greatly.”

RADIANT researchers will build a comprehensive resource of genetic, clinical, and descriptive data on previously unidentified forms of diabetes for the scientific and healthcare communities.

The study’s researchers will collect detailed health information using questionnaires, physical exams, genetic sequencing, blood samples, and other tests. People found to have unknown forms of diabetes may receive additional testing. Some participant family members may also be invited to take part in the study.

“With help from participants and their families, we aim to develop a comprehensive description of the genetic and clinical characteristics of these rare forms of diabetes,” said study chair, Dr. Jeffrey Krischer, director of the Health Informatics Institute at the University of South Florida (USF), Tampa. “This information could help to establish new diagnostic criteria for diabetes, find new markers for screening, or identify drug targets for new therapies that could ultimately bring precision medicine to diabetes.”

USF is the study’s coordinating center, and the lead centers include Baylor College of Medicine in Houston and the University of Chicago. The Broad Institute in Cambridge, Massachusetts, and Baylor serve as the genomic sequencing centers for the project. University of Florida, Gainesville, provides the study’s laboratory services. Other participating centers are:

Columbia University, New York City
Duke University, Durham, North Carolina
Geisinger Health System, Danville, Pennsylvania
Indiana University, Indianapolis
Massachusetts General Hospital, Boston
NorthShore University Health System, Chicago
Seattle Children’s Hospital, Seattle
SUNY Downstate Health Sciences University, Brooklyn
University of Colorado, Denver
University of Maryland, Baltimore
University of Michigan, Ann Arbor
University of North Carolina, Chapel Hill
University of Washington, Seattle
Vanderbilt University, Nashville, Tennessee
Washington University in St. Louis

“The RADIANT study will further clarify diabetes as a disease that has many different forms, and for which diagnosis and management for some of those forms remain a challenge,” said NIDDK Director Dr. Griffin P. Rodgers. “The discoveries of the study should provide critical understanding of the spectrum of diabetes and improve lives of people with rare forms of diabetes and everyone who cares for them.”

The study opened recruitment on September 30, 2020 for people with atypical diabetes or a form of diabetes that seems different from known types of diabetes. Visit www.atypicaldiabetesnetwork.org(link is external) for more information on the study and how to join.

Support for the study is provided through NIDDK grants U54DK118638 and U54DK118612.

The NIDDK, a component of the NIH, conducts and supports research on diabetes and other endocrine and metabolic diseases; digestive diseases, nutrition and obesity; and kidney, urologic and hematologic diseases. Spanning the full spectrum of medicine and afflicting people of all ages and ethnic groups, these diseases encompass some of the most common, severe and disabling conditions affecting Americans. For more information about the NIDDK and its programs, see https://www.niddk.nih.gov/.

About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

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