An overview of clinical activities in Endo-ERN: the need for alignment of future network criteria

de Vries, F., Bruin, M., Cersosimo, A., van Beuzekom, C., Ahmed, S. F. , Peeters, R. P., Biermasz, N. R., Hiort, O. and Pereira, A. M. (2020) An overview of clinical activities in Endo-ERN: the need for alignment of future network criteria. European Journal of Endocrinology, 183(2), pp. 141-148. (doi: 10.1530/eje-20-0197) (PMID:32413847)

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Objective Given that volumes of patients and interventions are important criteria to qualify as a reference centre (RC) for the European Reference Network on Rare Endocrine Conditions (Endo-ERN), the present study aimed to evaluate the data that were reported in the original application against subsequent assessments of activity and review the criteria that may define RCs using two main thematic groups (MTGs): Pituitary and Thyroid, as examples. Methods Review of content in application forms and continuous monitoring data and of a survey distributed to RCs. A list of ‘key procedures’ for the assessment of performance of RCs was composed with the help of the Pituitary and Thyroid MTG chairs. Results In the original application, the number of undefined procedures ranged from 20 to 5500/year (Pituitary) and from 10 to 2700/year (phyroid) between applicants. In the survey, the number of key procedures per centre ranged from 18 to 150/year (Pituitary) and from 20 to 1376/year (Thyroid). The median numbers of new patients reported in the continuous monitoring program were comparable with the application and survey; however, some centres reported large variations. Conclusions Monitoring of clinical activity in an ERN requires clear definitions that are optimally aligned with clinical practice, diagnosis registration, and hospital IT systems. This is a particular challenge in the rare disease field where the centre may also provide expert input in collaboration with local hospitals. Application of uniform definitions, in addition to condition-specific clinical benchmarks, which can include patient-reported- as well as clinician-reported outcome measures, is urgently needed to allow benchmarking of care across Endo-ERN.

Item Type:Articles
Additional Information:Funding: Endo-ERN is a European Reference Network co-funded by the European Union’s 3rd Health Programme (CHAFEA FPA grant No 739527).
Keywords:Endocrinology, Diabetes and Metabolism, Endocrinology, General Medicine.
Glasgow Author(s) Enlighten ID:Ahmed, Professor Syed Faisal
Authors: de Vries, F., Bruin, M., Cersosimo, A., van Beuzekom, C., Ahmed, S. F., Peeters, R. P., Biermasz, N. R., Hiort, O., and Pereira, A. M.
College/School:College of Medical Veterinary and Life Sciences > School of Medicine, Dentistry & Nursing
Journal Name:European Journal of Endocrinology
Publisher:Bioscientifica Ltd.
ISSN (Online):1479-683X
Published Online:01 August 2020
Copyright Holders:Copyright © 2020 The authors
First Published:First published in European Journal of Endocrinology 183(2):141-148
Publisher Policy:Reproduced under a Creative Commons License

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