Background

• Concerns about near-misses and deaths relating to misunderstanding of/inadequate treatment of diabetes insipidus. It is rare. General inadequate numbers to enable meaningful research. This work intends to determine the scale of the problem and seeks to provide factual evidence to support the name change campaign.
• By providing numbers of patients to get statistically significant groups

Aims and Objectives

• Put together a large cohort of DI patients, approximately 1000 patients from 15-20 centres initially.

Outputs

• A Registry to hold the data, researchers will be allowed to access the data via proposals to the Steering Group.
• Individual centres to fill in a proforma once per year for 3 years via a database, which will be hosted in University of Basal under the platform Secutrial.

Steering Group

Prof John Wass – Chair
Prof Mirjam Christ-Crain - Chair
Dr Miles Levy
Prof John Newell Price
Dr Niki Karavitaki
Lisa Shepherd
Debbie Cooper
Prof Martin Faßnacht-Capeller
Prof Nienke Biermasz
Dr Eva Coopmans
Dr Cihan Atila
Prof Mark Sherlock
Dr Kristina Isand

If you wish to have further information about this project please contact [email protected]