Natural History of Parathyroid Carcinoma
Parathyroid carcinoma is a rare endocrine disorder with an estimated incidence of 3.5-5.7 cases per 10.000.000 population and longitudinal studies on the natural history disease are lacking.
The parathyroid carcinoma module within the Core Registry has been developed by an expert team including representatives of Endo-ERN. This module includes questions aimed at identifying potential factors that influence diagnostics and treatment of this rare condition.
Objective
The parathyroid carcinoma study aims to collect epidemiological and routine clinical data on cases of parathyroid carcinoma to have a better understanding of the current therapeutic approach of patients with this condition.
For publications from this and other study groups, see our publication page.
Members of this Study Group
| Name(s) | Expertise / Role | Organisation |
|---|---|---|
| Lead: Maria Luisa Brandi | endocrinologist | Fondazione FIRMO Onlus, Fondazione Italiana per la Ricerca sulle Malattie dell’Osso, Donatello Bone Clinic, Casa di Cura Villa Donatello, Sesto Fiorentino, Italy |
| Francesca Marini | biologist | Fondazione FIRMO Onlus, Fondazione Italiana per la Ricerca sulle Malattie dell’Osso, Italy |
| Francesca Giusti | endocrinologist | Donatello Bone Clinic, Casa di Cura Villa Donatello, Sesto Fiorentino, Italy |
| Natasha Appelman-Dijkstra | endocrinologist | Leiden University Medical Center, the Netherlands |
| Mariya Cherenko | endocrinologist, EuRREB data manager | Leiden University Medical Center, the Netherlands |
| Maurizio Iacobone | endocrine surgeon | University of Padova, Italy |
| Lars Rejnmark | endocrinologist | Aarhus University Hospital, Denmark |
| Petra Bruegmann | patient representative | EMENA, Germany |
| Elisa Vitella Meschi | patient representative | AIMEN 1&2, Italy |
For more information regarding the study or if you are interested to contribute to this study, please contact registries@lumc.nl.