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Development of a pediatric differentiated thyroid carcinoma registry within the EuRRECa project: rationale and protocol

by sabine | Jun 1, 2023 | Publication

Development of a pediatric differentiated thyroid carcinoma registry within the EuRRECa project: rationale and protocol Background Although differentiated thyroid carcinoma (DTC) is the most frequent endocrine pediatric cancer, it is rare in childhood and adolescence....

Electronic reporting of rare endocrine conditions within a clinical network: results from the EuRRECa project

by sabine | Apr 1, 2023 | Publication

Electronic reporting of rare endocrine conditions within a clinical network: results from the EuRRECa project Objective The European Registries for Rare Endocrine Conditions (EuRRECa, eurreb.eu) includes an e-reporting registry (e-REC) used to perform surveillance of...

Data collection on rare bone and mineral conditions in Europe: The landscape of registries and databases

by sabine | Feb 1, 2023 | Publication

Data collection on rare bone and mineral conditions in Europe: The landscape of registries and databases  Read publication Overview publication Title Data collection on rare bone and mineral conditions in Europe: The landscape of registries and databases Date December...

Prenatal dexamethasone treatment for classic 21-hydroxylase deficiency in Europe

by sabine | Aug 1, 2022 | Publication

Prenatal dexamethasone treatment for classic 21-hydroxylase deficiency in Europe Objective To assess the current medical practice in Europe regarding prenatal dexamethasone (Pdex) treatment of congenital adrenal hyperplasia (CAH) due to 21-hydroxylase deficiency....

The European registry for rare bone and mineral conditions (EuRR-Bone): results of a survey on osteogenesis imperfecta and fibrous dysplasia McCune-Albright syndrome

by sabine | Apr 1, 2022 | Publication

The European registry for rare bone and mineral conditions (EuRR-Bone): results of a survey on osteogenesis imperfecta and fibrous dysplasia McCune-Albright syndrome  Read publication Overview publication Title The European registry for rare bone and mineral...

Meeting Report from 2nd ICCBH-ERN BOND Spinal Complications in Children and Adults with Achondroplasia Workshop, Dublin, Ireland, 2nd July 2022

by sabine | Mar 1, 2022 | Publication

Meeting Report from 2nd ICCBH-ERN BOND Spinal Complications in Children and Adults with Achondroplasia Workshop, Dublin, Ireland, 2nd July 2022  Read publication Overview publication Title Meeting Report from 2nd ICCBH-ERN BOND Spinal Complications in Children and...
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