Parathyroid Carcinoma

Parathyroid Carcinoma

This condition specific module was launched in November 2022 and is the work of the Parathyroid Carcinoma Study Group.

Want to start using the module? Get access to the Core Registry and read the instructions (, 1,013 KB) on how to use the module.

After entering the patient with the diagnosis of Parathyroid carcinoma (ORPHA143) or Hyperparathyroidism-jaw tumor syndrome (ORPHA99880) in the Core Registry, the Parathyroid carcinoma module appears automatically and is ready to use.

The module collects the information on:

  • Family and clinical history, symptoms, anamnestic data and genetic testing;
  • Laboratory tests and imaging (prior and after surgery);
  • Medical treatment (prior and after surgery);
  • Surgery, histology and somatic genetic testing, post-operative data;
  • Recurrences.

If you have questions or interest in joining the working group, please contact us on:

The full data dictionary can be downloaded here.

The modules should be updated every 12 months when patients are under active control and/or in case of recurrence. If not, updates should be provided every 3 years. Of course, additional data can be entered on demand.

You only have to fill out the relevant modules to your patient (e.g., when there are no recurrences) – these modules can be left empty.

Do not forget to assess quality of life by EQ-5D-5L and PHPQoL (either by clinician or patient with access) yearly.

Tools used in the module

  • PHPQoL – specific questionnaire to assess the impact of hyperparathyroidism (calcium-related problems) on daily life
  • EQ-5D-5L