SNOMED International, responding to an external request from an international group of representatives of national and international endocrinology, nephrology and pediatric societies, is improving concepts referring to diabetes insipidus in SNOMED CT. Existing diabetes insipidus concepts will be renamed or replaced with new concepts representing current terminology for this disorder.

In October 2022, the Working Group for Renaming Diabetes Insipidus published a paper outlining the rationale for the retirement of the term “diabetes insipidus” and the replacement with terms that more appropriately represent the pathophysiology of this set of conditions. Since then, a number of professional societies, as well as UpToDate, a primary source of truth for SNOMED CT, have endorsed the proposed changes, which have also been adopted by a number of primary references. 

A November 2022 Springer article, titled ‘What’s in a name? That which we call diabetes does not taste sweet!’ says most health care professionals are familiar with the term “diabetes,” a shortening of the name for the common disorder “diabetes mellitus,” but the term “diabetes insipidus” is rare and many practitioners are unfamiliar with the diagnosis and its pathophysiology and management, leading to potentially serious consequences for patients.

Concepts previously referring to diabetes insipidus in the SNOMED CT International Edition are affected by the changes. For each of the affected terms, either a name change or a replacement term was created to reflect the current terminology as determined by the expert group. The primary focus was to reflect the newer terminology of “arginine-vasopressin deficiency” or “arginine-vasopressin resistance,” which have been verified by subject matter experts to ensure clinical veracity to either central or nephrogenic etiologies. “We’re excited to provide the  updated content related to this condition, and, hopefully, building greater awareness through correct terminology so providers have the information they need to accurately diagnose and treat patients,” says SNOMED International Chief Terminologist Dr James Case. “This process is a perfect example of how our community and SNOMED International work together to continually develop and improve SNOMED CT.”

“This new nomenclature is an important step for patient safety, as many healthcare practitioners have confused diabetes insipidus with the much more common diabetes mellitus, which led to unnecessary blood sugar measurements but also much worse consequences including death,” explains Mirjam Christ-Crain, MD PhD, Professor of Endocrinology, University Hospital Basel, Switzerland. As a member of the working group to rename diabetes insipidus, I am extremely grateful to SNOMED International for this pragmatic implementation of the new names. We are already now experiencing that the new name is widely accepted, among physicians and patients alike,” she adds.

The content changes have been completed and are scheduled for the February 2024 International release of SNOMED CT. 

Contact info@snomed.org for a list of the affected concepts.