Design and development of a European registry for parathyroid carcinoma cases within the scope of the European Registries for Rare Endocrine Conditions (EuRRECa)
Francesca Marini, Francesca Giusti, Natasha Appelman-Dijkstra, Mariya Cherenko, Maurizio Iacobone,
Lars Rejnmark, Petra Bruegmann, Elisa Vitella Meschi, Paolo Lucibello, Carlo Biagini, Maria
Parathyroid carcinoma (PC) is an extremely rare malignant endocrine tumor of the parathyroid glands. Given the extreme rarity of this cancer, many issues regarding its diagnosis, prognosis, clinical management, and tumor-derived complications remain unresolved, and no standardized protocol has yet been defined for its diagnosis. As with all rare clinical conditions, the creation of multicenter national databases and international registries is fundamental in order to collect data on a relatively high number of PC cases and increase knowledge of this rare parathyroid condition, with the ultimate aim of identifying potential factors that influence its diagnostics, natural course, prognosis, skeletal complications, and treatment. In this light, the “parathyroid carcinoma working group” (https://eurreca.net/parathyroid-carcinoma/) designed and developed a specific PC module within the scope of the European Registries for Rare Endocrine Conditions (EuRRECa).
The module, finalized and launched at the end of 2022, is now available online to collect data on PC cases. Users must first request access to the e-Reporting of Rare Conditions system (e-REC) and obtain their personal login credentials.
KEY WORDS: Parathyroid carcinoma, rare diseases, European Registries for Rare Endocrine Conditions (EuRRECa), parathyroid carcinoma module
