The disease specific module was launched November 2022 and is the work of the Parathyroid carcinoma expert team.
- prof. Maria Luisa Brandi – Fondazione FIRMO Onlus, Fondazione Italiana per la Ricerca sulle Malattie dell’Osso, Donatello Bone Clinic, Casa di Cura Villa Donatello, Sesto Fiorentino, Italy
- dr Francesca Marini – Fondazione FIRMO Onlus, Fondazione Italiana per la Ricerca sulle Malattie dell’Osso, Italy
- dr Francesca Giusti – Donatello Bone Clinic, Casa di Cura Villa Donatello, Sesto Fiorentino, Italy
- prof. Lars Rejnmark – ENDO-ERN MTG 2, Aarhus University Hospital, Denmark
- prof. Maurizio Iacobone – the European Board of Surgery – Endocrine Surgery Section – University of Padova, Italy
- dr Natasha Appelman-Dijkstra – EuRR-Bone coordinator, Leiden University Medical Center, The Netherlands
- dr Mariya Cherenko – EuRR-Bone fellow, Leiden University Medical Center, The Netherlands
- Petra Bruegmann – patient representative from EMENA
- Elisa Vitella Meschi – patient representative from AIMEN 1&2
Want to start using the module? Get access to the Core registry here and read the instructions about how to use the module. After entering the patient in the Core Registry, the Parathyroid carcinoma module appears automatically and is ready to use.
If you have questions or interest in joining the working group, please contact us on: EuRR_Bone@lumc.nl
The full data dictionary can be downloaded here when available.
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 eg when there are no recurrences – these modules can be left empty.
Do not forget to assess quality of life by EQ5D 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
Eurr-Bone 