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Statement calls for diabetes insipidus name change to protect patients

14 Oct 2022

A position statement issued by a global, cross-organisational Working Group for Renaming Diabetes Insipidus, including the Society for Endocrinology, was co-published today in multiple journals.

The statement outlines the need for a name change that reflects the underlying pathophysiology of diabetes insipidus. The Society's Clinical Committee strongly believes that the name ‘diabetes insipidus’ should be changed to help protect patients’ lives and reduce confusion about the condition. We also encourage other healthcare bodies and professional societies to support this proposal. 

Evidence indicates that the name is often confused with diabetes mellitus, to the detriment of patients with diabetes insipidus when they are under the care of non-endocrine specialists. Some physicians and nurses do not appreciate the difference between these two very different disorders. This has resulted in some patients having essential treatment withheld, leading to serious adverse outcomes, including death.

Patients with diabetes insipidus strongly support changing the name to eliminate “diabetes” (85% in a survey of >1,000 patients) because of their experiences with health professionals confusing the disorder with diabetes mellitus.

We believe that the names of medical disorders should reflect the underlying pathophysiology, which in the case of diabetes insipidus is well known to be deficient secretion and/or end-organ effects of the hormone arginine vasopressin.

We are proud to be working with other societies and professional healthcare bodies across the world to make this important name change, to ‘arginine vasopressin deficiency (AVP-D)’ for central etiologies, and ‘arginine vasopressin resistance (AVP-R)’ for peripheral nephrogenic etiologies.

Read the statement in Endocrine Connections