Hypoparathyroidism

The condition specific module was launched in April 2026 and is the work of the Hypoparathyroidism Working Group.

Want to start using the module? Get access to the Core Registry and read the instructions (download, 2 MB) on how to use the module.

After entering the patient with hypoparathyroidism in the Core Registry, the module appears automatically and is ready to use.

The full data dictionary can be downloaded here.

The module collects information on

• Clinical manifestation (at presentation and during the life-course)
• Genetic testing
• Comorbidities
• Laboratory results
• Treatment

Frequency of the data collection

The working group has decided on at least annual data collection, unless additional data entry (in case of important events) is needed. For this purpose a new outcome is created at every time point (the fields will be prefilled with the previously entered data).

Tools used in the module

• EQ-5D-5L
• HPQ-28 

Please check out our study groups overview for current studies that include data from this module. If you are interested in working with data from this module, please fill out a Data Request Form. 

If you have any questions or interest in joining the Working Group, please contact us at registries@lumc.nl 

Financial disclaimer and funding transparancy: This Hypoparathyroidism module is created with support from Ascendis Pharma and BridgeBio and is primarily funded by the European Union. Our financial report is publicly available.