Earlier this year, we were made aware of a shortage of desmopressin 10 microgram / dose nasal spray. Since then, we have heard from many members of our community about the significant impact that this shortage has had on themselves and their loved ones.

We want to better understand the impact of this shortage and are asking for people to fill out this short survey. This survey should take around 5 minutes to complete and your responses will be completely anonymous.

Please note, information you provide in this survey may be shared externally with other organisations, such as pharmaceutical companies, healthcare professionals, government organisations and other charities. This information will form part of a wider effort to address this shortage and the issues it has caused, and your responses will remain completely anonymous. By completing this survey, you are agreeing to have your responses shared with third-parties, as outline above. 

Please only complete this survey if the following applies:

• You live in the UK (and so are users of the NHS) and are aged 18 or over
• Have a diagnosed condition that requires treatment with desmopressin (such as AVP deficiency, previously diabetes insipidus). Please note, you can also fill out this survey on behalf of someone else who this applies to
• Have been affected by the shortage of desmopressin 10 microgram / dose nasal spray

This survey will be open until Thursday 26th June 2025.

More information on this shortage can be found here. If you have any questions about this survey, please contact [email protected].

We have received feedback that some people are only being provided with prescriptions for 28 day / 1 month supplies of the following vital medications:

• Hydrocortisone (in its various forms)
• Desmopressin
• Levothyroxine
• Prednisolone
• Testosterone
• Oestrogen

We believe it is important that people receive prescriptions for longer than this (ideally 3 months or more). This helps prevent you from running out of vital medications and avoids further inconvenience with the regularity of requests.

We would like to understand how many people are affected by this issue. Therefore, we are asking our community to fill out this survey to provide information about what length of prescription you currently receive.

This survey should take around 2 minutes to complete and is anonymous (unless you choose to provide contact details).  

Please note, if you receive prescriptions for more than 1 of the vital medications listed above and these prescriptions are for different lengths (e.g. a 1-month supply of hydrocortisone and a 3-month supply of testosterone), please answer the survey in relation to the shortest prescription you receive. 

To better understand this issue, we are collaborating with Addison’s Disease Self-Help Group, who are also carrying out a similar survey. Please only answer one of these surveys.

We'd love to hear from you if:

• You are over 18 and
• You live in the UK (so are users of the NHS) and
• You have a diagnosis of a pituitary condition that requires management with one (or more) of the medications listed above

What is this survey?

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! 

Researchers wish to gather insights from clinicians on how AVP deficiency is understood, diagnosed, and managed across specialties (both endocrine and non-endocrine). If you are a healthcare professional, 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/

Not a clinician but want to get involved? You can share this survey with your healthcare providers (endocrinologists, GPs, nurses, pharmacists) and ask them to submit a response! You can share the URL link to this page or ask them to scan the QR code below.

Scan or share this QR code to access the survey.