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

S R Ali, J Bryce, A L Priego-Zurita, M Cherenko, C Smythe, T M de Rooij, Martine Cools (UGent) , T Danne, H Katugampola, O M Dekkers, et al.
(2023) ENDOCRINE CONNECTIONS. 12(12).
Author
Organization
Project
Abstract
ObjectiveThe 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.MethodsElectronic 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.ResultsThe 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).Conclusionse-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.Significance statementEndocrinology includes a very wide range of rare conditions and their occurrence is often difficult to measure. By using an electronic platform that allowed monthly reporting of new clinical encounters of several rare endocrine conditions within a defined network that consisted of several reference centres in Europe, the EuRRECa project shows that a programme of e-surveillance is feasible and acceptable. The data that have been collected by the e-reporting of rare endocrine conditions (e-REC) can allow the continuous monitoring of rare conditions and may be used for clinical benchmarking, designing new studies or recruiting to clinical trials.Conclusionse-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.Significance statementEndocrinology includes a very wide range of rare conditions and their occurrence is often difficult to measure. By using an electronic platform that allowed monthly reporting of new clinical encounters of several rare endocrine conditions within a defined network that consisted of several reference centres in Europe, the EuRRECa project shows that a programme of e-surveillance is feasible and acceptable. The data that have been collected by the e-reporting of rare endocrine conditions (e-REC) can allow the continuous monitoring of rare conditions and may be used for clinical benchmarking, designing new studies or recruiting to clinical trials.Conclusionse-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. Significance statementEndocrinology includes a very wide range of rare conditions and their occurrence is often difficult to measure. By using an electronic platform that allowed monthly reporting of new clinical encounters of several rare endocrine conditions within a defined network that consisted of several reference centres in Europe, the EuRRECa project shows that a programme of e-surveillance is feasible and acceptable. The data that have been collected by the e-reporting of rare endocrine conditions (e-REC) can allow the continuous monitoring of rare conditions and may be used for clinical benchmarking, designing new studies or recruiting to clinical trials.
Keywords
Endocrinology, Endocrinology, Diabetes and Metabolism, Internal Medicine, endo-ERN, European Reference Networks, rare diseases, rare conditions, databases, registries

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MLA
Ali, S. R., et al. “Electronic Reporting of Rare Endocrine Conditions within a Clinical Network : Results from the EuRRECa Project.” ENDOCRINE CONNECTIONS, vol. 12, no. 12, Bioscientifica, 2023, doi:10.1530/ec-23-0434.
APA
Ali, S. R., Bryce, J., Priego-Zurita, A. L., Cherenko, M., Smythe, C., de Rooij, T. M., … Ahmed, S. F. (2023). Electronic reporting of rare endocrine conditions within a clinical network : results from the EuRRECa project. ENDOCRINE CONNECTIONS, 12(12). https://doi.org/10.1530/ec-23-0434
Chicago author-date
Ali, S R, J Bryce, A L Priego-Zurita, M Cherenko, C Smythe, T M de Rooij, Martine Cools, et al. 2023. “Electronic Reporting of Rare Endocrine Conditions within a Clinical Network : Results from the EuRRECa Project.” ENDOCRINE CONNECTIONS 12 (12). https://doi.org/10.1530/ec-23-0434.
Chicago author-date (all authors)
Ali, S R, J Bryce, A L Priego-Zurita, M Cherenko, C Smythe, T M de Rooij, Martine Cools, T Danne, H Katugampola, O M Dekkers, O Hiort, A Linglart, I Netchine, A Nordenstrom, P Attila, L Persani, N Reisch, A Smyth, Z Sumnik, D Taruscio, W E Visser, A M Pereira, N M Appelman-Dijkstra, and S F Ahmed. 2023. “Electronic Reporting of Rare Endocrine Conditions within a Clinical Network : Results from the EuRRECa Project.” ENDOCRINE CONNECTIONS 12 (12). doi:10.1530/ec-23-0434.
Vancouver
1.
Ali SR, Bryce J, Priego-Zurita AL, Cherenko M, Smythe C, de Rooij TM, et al. Electronic reporting of rare endocrine conditions within a clinical network : results from the EuRRECa project. ENDOCRINE CONNECTIONS. 2023;12(12).
IEEE
[1]
S. R. Ali et al., “Electronic reporting of rare endocrine conditions within a clinical network : results from the EuRRECa project,” ENDOCRINE CONNECTIONS, vol. 12, no. 12, 2023.
@article{01HMRSRPSJ679RHMA4Q99YME2V,
  abstract     = {{ObjectiveThe 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.MethodsElectronic 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.ResultsThe 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).Conclusionse-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.Significance statementEndocrinology includes a very wide range of rare conditions and their occurrence is often difficult to measure. By using an electronic platform that allowed monthly reporting of new clinical encounters of several rare endocrine conditions within a defined network that consisted of several reference centres in Europe, the EuRRECa project shows that a programme of e-surveillance is feasible and acceptable. The data that have been collected by the e-reporting of rare endocrine conditions (e-REC) can allow the continuous monitoring of rare conditions and may be used for clinical benchmarking, designing new studies or recruiting to clinical trials.Conclusionse-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.Significance statementEndocrinology includes a very wide range of rare conditions and their occurrence is often difficult to measure. By using an electronic platform that allowed monthly reporting of new clinical encounters of several rare endocrine conditions within a defined network that consisted of several reference centres in Europe, the EuRRECa project shows that a programme of e-surveillance is feasible and acceptable. The data that have been collected by the e-reporting of rare endocrine conditions (e-REC) can allow the continuous monitoring of rare conditions and may be used for clinical benchmarking, designing new studies or recruiting to clinical trials.Conclusionse-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.

Significance statementEndocrinology includes a very wide range of rare conditions and their occurrence is often difficult to measure. By using an electronic platform that allowed monthly reporting of new clinical encounters of several rare endocrine conditions within a defined network that consisted of several reference centres in Europe, the EuRRECa project shows that a programme of e-surveillance is feasible and acceptable. The data that have been collected by the e-reporting of rare endocrine conditions (e-REC) can allow the continuous monitoring of rare conditions and may be used for clinical benchmarking, designing new studies or recruiting to clinical trials.}},
  articleno    = {{e230434}},
  author       = {{Ali, S R and Bryce, J and Priego-Zurita, A L and Cherenko, M and Smythe, C and de Rooij, T M and Cools, Martine and Danne, T and Katugampola, H and Dekkers, O M and Hiort, O and Linglart, A and Netchine, I and Nordenstrom, A and Attila, P and Persani, L and Reisch, N and Smyth, A and Sumnik, Z and Taruscio, D and Visser, W E and Pereira, A M and Appelman-Dijkstra, N M and Ahmed, S F}},
  issn         = {{2049-3614}},
  journal      = {{ENDOCRINE CONNECTIONS}},
  keywords     = {{Endocrinology,Endocrinology, Diabetes and Metabolism,Internal Medicine,endo-ERN,European Reference Networks,rare diseases,rare conditions,databases,registries}},
  language     = {{eng}},
  number       = {{12}},
  pages        = {{12}},
  publisher    = {{Bioscientifica}},
  title        = {{Electronic reporting of rare endocrine conditions within a clinical network : results from the EuRRECa project}},
  url          = {{http://doi.org/10.1530/ec-23-0434}},
  volume       = {{12}},
  year         = {{2023}},
}
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