Background: EuRRECa (European Registries for Rare Endocrine Conditions) is a new project incorporating the development of a core endocrine registry and the development of an e-reporting programme for rare endocrine conditions (e-REC) that are covered within Endo-ERN (https://eurreca.net/e-rec/).
Methods: 24 Endo-ERN centres within 12 countries participated in a pilot phase of e-REC from July 2018 to December 2018. An electronic reporting 'card' developed through Redcap was issued monthly to enquire whether clinicians had encountered a new case of any conditions within the eight Endo-ERN main thematic groups (MTGs).
Results: 23 centres were invited to report on paediatric cases and 24 centres were invited to report on adult cases. Of these, a median of 15 (range 12, 16) paediatric centres and 13 (12, 14) adult centres actively reported cases and a median of 44 (27, 75) paediatric cases and 83 (42, 120) adult cases were reported on a monthly basis. Amongst paediatric cases, conditions within the Sex Development, Thyroid and Pituitary MTGs were most commonly reported comprising 41%, 15% and 12% of all reported conditions, respectively. Amongst adult cases, conditions within Pituitary, Thyroid and Adrenal MTGs were most commonly reported, making up 41%, 19% and 10% of conditions, respectively. In children, the median number of cases reported per centre over a 6-month period was 17 (9, 32) for conditions affecting Sex Development, 6 (3, 11) for Thyroid disorders and 5 (3, 9) for Pituitary disorders. In adults, for the most commonly reported conditions, the median number of cases reported per centre were 35 (16, 44), 16 (5, 24) and 8 (1, 22) for Pituitary, Thyroid and Adrenal MTGs respectively.
Conclusion: The e-REC platform can be used to capture information on new encounters with patients with rare endocrine conditions. Results from the pilot phase of e-REC show a wide variability in the number of patients with specific groups of rare conditions that are encountered in the paediatric and adult settings and following the pilot phase, the platform has now been launched for general use. It is anticipated that the outputs from this project will be of interest to a wide range of stakeholders.
19 - 21 Sep 2019
European Society for Paediatric Endocrinology