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

Ali, S.R. et al. (2023) Electronic reporting of rare endocrine conditions within a clinical network: Results from the EuRRECa project. Endocrine Connections, 12(12), e230434. (doi: 10.1530/EC-23-0434) (PMID:37902973) (PMCID:PMC10692689)

Abstract

Objective The European Registries for Rare Endocrine Conditions (EuRRECa, eurreb.eu) includes an e-reporting registry (e-REC) used to perform surveillance of conditions within the European Reference Network (ERN) for rare endocrine conditions (Endo-ERN). The aim of this study was to report the experience of e-REC over the 3.5 years since its launch in 2018. Methods Electronic reporting capturing new encounters of Endo-ERN conditions was performed monthly through a bespoke platform by clinicians registered to participate in e-REC from July 2018 to December 2021. Results The number of centres reporting on e-REC increased to a total of 61 centres from 22 countries. A median of 29 (range 11, 45) paediatric and 32 (14, 51) adult centres had reported cases monthly. A total of 9715 and 4243 new cases were reported in adults (age ≥18 years) and children, respectively. In children, sex development conditions comprised 40% of all reported conditions and transgender cases were most frequently reported, comprising 58% of sex development conditions. The median number of sex development cases reported per centre per month was 0.6 (0, 38). Amongst adults, pituitary conditions comprised 44% of reported conditions and pituitary adenomas (69% of cases) were most commonly reported. The median number of pituitary cases reported per centre per month was 4 (0.4, 33). Conclusions e-REC has gained increasing acceptability over the last 3.5 years for capturing brief information on new encounters of rare conditions and shows wide variations in the rate of presentation of these conditions to centres within a reference network.

• Item Type: Articles
• Additional Information: S.F.A., J.B. and L.P. are supported by the European Union’s Health Programme (2014–2020) on the EuRRECa project ‘777215/EuRRECa’. S.F.A., N.M.A-D. and A.P.Z. are supported by the European Union’s Health Programme (2014–2020) on the EuRR-Bone project ‘946831/EuRR-Bone’. The EuRRECa and Endo-ERN projects are also grateful to the European Society of Endocrinology and the European Society for Paediatric Endocrinology for funding support. A.M.P. is supported by the European Reference Network on Rare Endocrine Conditions (Endo-ERN). EndoERN is funded by the European Union within the framework of the EU4H Programme, grant agreement number: 101084921.
• Status: Published
• Refereed: Yes
• Glasgow Author(s) Enlighten ID: Ali, Dr Salma and Ahmed, Professor Syed Faisal
• Authors: Ali, S.R., Bryce, J., Priego-Zurita, A.L., Cherenko, M., Smythe, C., de Rooij, T.M., Cools, M., Danne, T., Katugampola, H., Dekkers, O.M., Hiort, O., Linglart, A., Netchine, I., Nordenstrom, A., Attila, P., Persani, L., Reisch, N., Smyth, A., Sumnik, Z., Taruscio, D., Visser, W.E., Pereira, A.M., Appelman-Dijkstra, N.M., and Ahmed, S.F.
• College/School: College of Medical Veterinary and Life Sciences > School of Medicine, Dentistry & Nursing
• Journal Name: Endocrine Connections
• Publisher: Bio Scientifica
• ISSN: 2049-3614
• Published Online: 20 November 2023
• Copyright Holders: Copyright: © 2023 the author(s)
• First Published: First published in Endocrine Connections 12(12): e230434
• Publisher Policy: Reproduced under a Creative Commons licence