Tseretopoulou, X., Bryce, J. , Chen, M., McMillan, M., Lucas-Herald, A. K. , Ali, S. R. and Ahmed, S.F. (2023) The I‐CAH registry: a platform for international collaboration for improving knowledge and clinical care in congenital adrenal hyperplasia. Clinical Endocrinology, (doi: 10.1111/cen.14961) (PMID:37602832) (Early Online Publication)
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Abstract
To provide an overview of the I-CAH Registry. Following the successful roll-out of the I-DSD Registry in the 2000s, it was felt that there was a need for a registry for congenital adrenal hyperplasia (CAH) and this was launched in 2014 as a dedicated module within the original registry. In addition to supporting and promoting research, the I-CAH Registry acts as an international tool for benchmarking of clinical care and it does this through the collection of standardised data for specific projects. Surveillance of novel therapies in the field of CAH can also be achieved via global collaborations. Its robust governance ensures adherence to the international standards for rare disease registries. Rare disease registries such as the I-CAH Registry are important tools for all stakeholders involved in the care of people with CAH.
| Item Type: | Articles |
|---|---|
| Additional Information: | The I-CAH/I-DSD registries were developed using support research grants from the Medical Research Council (G1100236), the Seventh European Union Framework Programme (201444), the European Society for Paediatric Endocrinology Research Unit and an unrestricted education grant from Diurnal Ltd. X. T. is supported by an unrestricted education grant from Neurocrine Biosciences. |
| Status: | Early Online Publication |
| Refereed: | Yes |
| Glasgow Author(s) Enlighten ID: | Ahmed, Professor Syed Faisal and Ali, Dr Salma and Bryce, Dr Jillian and Lucas-Herald, Dr Angela and McMillan, Mr Martin and Chen, Mrs Minglu |
| Authors: | Tseretopoulou, X., Bryce, J., Chen, M., McMillan, M., Lucas-Herald, A. K., Ali, S. R., and Ahmed, S.F. |
| College/School: | College of Medical Veterinary and Life Sciences > School of Medicine, Dentistry & Nursing |
| Journal Name: | Clinical Endocrinology |
| Publisher: | Wiley |
| ISSN: | 0300-0664 |
| ISSN (Online): | 1365-2265 |
| Published Online: | 21 August 2023 |
| Copyright Holders: | Copyright © 2023 The Authors |
| First Published: | First published in Clinical Endocrinology 2023 |
| Publisher Policy: | Reproduced under a Creative Commons licence |
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