ECE2021 Audio Eposter Presentations Calcium and Bone (75 abstracts)
European Registries for Rare Endocrine Conditions (EuRRECa): The use of an e-reporting tool for registering calcium and phosphate conditions
Ana Luisa Priego Zurita 1 , Jillian Bryce 2 , Salma Rashid Ali 3 , Diana-Alexandra Ertl 4 , Corinna Grasemann 5 , Gabriele Haeusler 4 , Lars Rejnmark 6 , Faisal Ahmed 1 , 2 , 3 , Natasha Appelman-Dijkstra 1 & Agnès Linglart 7
1Leids Universitair Medisch Centrum, Department of Medicine, Division of Endocrinology, Leiden, Netherlands; 2University of Glasgow, Office for Rare Conditions, Glasgow, United Kingdom; 3University of Glasgow, Developmental Endocrinology Research Group, Royal Hospital for Children, Glasgow, United Kingdom; 4Medical University of Vienna, Comprehensive Center for Pediatrics, Department of Pediatrics and Adolescent Medicine, Division of Pediatric Pulmonology, Allergology and Endocrinology, Wien, Austria; 5Ruhr-Universität Bochum, Department of Pediatrics- Saint Josef-Hospital, Bochum, Germany; 6Aarhus University, Department of Endocrinology and Internal Medicine, Aarhus, Denmark; 7Bicetre Hospital AP-HP, Department of Pediatric Endocrinology and Diabetology for Children, Le Kremlin-Bicêtre, France
Introduction
The European Registries for Rare Endocrine Conditions (EuRRECa) project was launched in February 2018 and aims to support the needs of the endocrine and bone community by facilitating the collaboration between patients, health care professionals and researchers across Europe and beyond. It is closely linked to the European Reference Networks on Rare Endocrine Conditions (Endo-ERN) and Rare Bone Diseases (ERN BOND) with its registry EuRR-Bone. EuRRECa is open to all professionals involved in endocrine care, providing two different tools: a core registry that includes new and existing cases and an electronic reporting tool (e-Reporting of Rare Conditions) for newly encountered cases.
Objective
To describe the user community characteristics and the generated data on the Calcium and Phosphate condition group via the electronic reporting tool, e-REC (e-Reporting of Rare Conditions) in the period July 2018 to December 2020.
Methods
Clinicians willing to participate are provided with access to e-Rec and receive invitations to complete a monthly return to report new cases of conditions that are included in Endo-ERN and ERN BOND. e-REC does not collect personally identifiable information and when a case is reported a unique ID is generated and provided to the user to be stored locally at reporting centres.
Results
Between July 2018 and December 2020 a total of 38 centres from 18 different countries reported cases in this condition group. Of these, 26 are Endo-ERN and 11 are ERN BOND members and 16 participate in both. A total of 163 adults and 144 children were newly diagnosed with a Calcium and Phosphate condition. Amongst adults, the most frequently reported conditions were hypoparathyroidism (n = 66), hyperparathyroidism including parathyroid cancer (n = 47) and X-linked hypophosphataemia (n = 13). In children pseudohypoparathyroidism (n = 44), hypoparathyroidism (n = 23) and X-linked hypophosphataemia (n = 27) were the most reported.
Conclusion
The number of centres joining the project and reporting cases continues to grow. e-REC is a promising tool enabling clinical networks to objectively map conditions and related activity. This highlights that genetic disorders are the most frequent cause of calcium and phosphate disturbances in children and provides a better understanding of the occurrence of the rare endocrine and bone conditions. Wide dissemination of the use of the platform is essential.
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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