Renaming Cranial Diabetes Insipidus to AVP-Deficiency 

The endocrine community has responded to a call to arms made by patients with Cranial Diabetes Insipidus. The name has now been formally changed to Arginine Vasopressin Deficiency (AVP-D). Whilst the old term can still be used, AVP-Deficiency is preferable as it indicates both causation and treatment. In a Lancet D&E paper of more than 1,000 patients, 80% had said their condition was confused with Diabetes Mellitus leading to confusion and mismanagement, and 85% said they wanted the name changed. There have been high profile disasters, where patients have died of dehydration by not receiving desmopressin or fluids because clinicians thought they had Diabetes Mellitus. This is a tragedy as it would have been preventable if the right treatment was given. The name change has been a truly collaborative and global project involving many countries and we are very grateful to all who have worked on it, including patients, colleagues and the global authority on clinical health terminology (SNOMED CT). We are now in the implementation phase where we hope that endocrinologists around the world will use the new terminology AVP-Deficiency to replace Cranial Diabetes Insipidus in an effort to improved care for our patients with this condition.

>> This video from the UK demonstrates the reason for the name change (2m 13s)

>> This educational video regarding the care of patients with AVP-D can be shared with colleagues (2m 42s)

Professor Miles J Levy FRCP MD MSc, Consultant Endocrinologist
On Behalf of the Global Diabetes Insipidus Renaming Group

References:
Newell-Price et al. JCEM: 110 (2) 2024
Cihan et al. Lancet D&E 10(10):700-709 2022
Arima H et al. JCEM: 108 (1) 2022