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    • Natural History Achondroplasia
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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 Expertise / Role Country
PI*: Maria Luisa Brandi endocrinologist Italy
Elisa Vitella Meschi patient representative Italy
Francesca Giusti endocrinologist Italy
Francesca Marini biologist Italy
Lars Rejnmark endocrinologist Denmark
Mariya Cherenko endocrinologist, EuRREB data manager the Netherlands
Maurizio Iacobone endocrine surgeon Italy
Natasha Appelman-Dijkstra internist-endocrinologist, EuRREB coordinator the Netherlands
Petra Bruegmann patient representative Germany

 

For more information regarding the study or if you are interested to contribute to this study, please contact registries@lumc.nl.

 

*The Principal Investigator (PI) is the lead applicant responsible for submitting the data request and initiating the study.

 

Visiting address

Leiden University Medical Center
Department of Endocrinology
Room C7-57, route 222
Albinusdreef 2
2333 ZA Leiden, the Netherlands

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