Publicatiedatum: 10 februari 2025
Dear WAPO Member and Friends,
As a follow-up of the earlier Patient survey, we now developed a survey for Healthcare Professionals to improve the knowledge on Arginine VasoPressin Deficiency (AVP-D).
Many people with a pituitary or adrenal disorder are dealing with AVP-d, and are often treated incorrectly due to lack of knowledge!
To raise more awareness and improve visibility, we need your support in resharing!
Please share with your members, and ask them to reshare with their HealthCare Professionals, Nurses, Pharmacists and other related stakeholders.
We prepared the below text for resharing, through email or social media:
🧑🏽⚕️ Health Care Professionals: We Need Your Input! 📢
In 2022, the Endocrine Society and the global ‘Working Group for Renaming Diabetes Insipidus’ recommended a name change from diabetes insipidus (CDI) to Arginine Vasopressin Deficiency (AVP-Deficiency, AVP-D) in order to better reflect the condition’s pathophysiology and avoid confusion with diabetes mellitus.
But has this change been widely adopted in clinical practice? Is there still confusion between the two terms in 2025? Do healthcare professionals and patients understand how to safely manage AVP-D and desmopressin (and avoid complications like hyponatremia and hypernatremia)?
🌎 This global survey aims to find out!
We wish to gather insights on how AVP-Deficiency is understood, diagnosed, and managed across specialties (both endocrine and non-endocrine). Your participation will help improve patient education and clinical practices for this rare condition.
The survey takes just a few minutes, and your responses are anonymous. You can reply to the survey here: https://feedback.surveylab.com/92c/HCP/AVP-D/SURVEY/
Your time and effort is greatly appreciated: by answering our survey you will be helping us to improve AVP-D awareness and patient safety! 🤝
And please share with your network so that we can reach the maximum number of healthcare professionals possible!
—
Additional Information on Outcomes Patients Survey, presented by Dr. Cihan Atila (Neuro-endocrinology group at Basel University, Switzerland)
during the WAPO Global Summit 2024:
English: https://www.wapo.org/library/ws24-avp-d-diabetes-insipidus-study-outcomes-and-more-c-atila-clin-neuroendocrinology-university-basel-switzerland/
Spanish: https://www.wapo.org/library/ws24-spa-avp-d-diabetes-insipidus-study-outcomes-and-more-c-atila-clin-neuroendocrinology-university-basel-switzerland/
Thanking you in advance,
WAPO Board of Directors,
Robert, Sandra, Clive, Muriël
