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A renal registry for Africa: first steps.

Davids, MR; Eastwood, JB; Selwood, NH; Arogundade, FA; Ashuntantang, G; Benghanem Gharbi, M; Jarraya, F; MacPhee, IA; McCulloch, M; Plange-Rhule, J; et al. Davids, MR; Eastwood, JB; Selwood, NH; Arogundade, FA; Ashuntantang, G; Benghanem Gharbi, M; Jarraya, F; MacPhee, IA; McCulloch, M; Plange-Rhule, J; Swanepoel, CR; Adu, D (2015) A renal registry for Africa: first steps. Clinical Kidney Journal, 9 (1). pp. 162-167. ISSN 2048-8505 https://doi.org/10.1093/ckj/sfv122
SGUL Authors: MacPhee, Iain Angus MacGregor Eastwood, John Bannister

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Abstract

There is a dearth of data on end-stage renal disease (ESRD) in Africa. Several national renal registries have been established but have not been sustainable because of resource limitations. The African Association of Nephrology (AFRAN) and the African Paediatric Nephrology Association (AFPNA) recognize the importance of good registry data and plan to establish an African Renal Registry. This article reviews the elements needed for a successful renal registry and gives an overview of renal registries in developed and developing countries, with the emphasis on Africa. It then discusses the proposed African Renal Registry and the first steps towards its implementation. A registry requires a clear purpose, and agreement on inclusion and exclusion criteria, the dataset and the data dictionary. Ethical issues, data ownership and access, the dissemination of findings and funding must all be considered. Well-documented processes should guide data collection and ensure data quality. The ERA-EDTA Registry is the world's oldest renal registry. In Africa, registry data have been published mainly by North African countries, starting with Egypt and Tunisia in 1975. However, in recent years no African country has regularly reported national registry data. A shared renal registry would provide participating countries with a reliable technology platform and a common data dictionary to facilitate joint analyses and comparisons. In March 2015, AFRAN organized a registry workshop for African nephrologists and then took the decision to establish, for the first time, an African Renal Registry. In conclusion, African nephrologists have decided to establish a continental renal registry. This initiative could make a substantial impact on the practice of nephrology and the provision of services for adults and children with ESRD in many African countries.

Item Type: Article
Additional Information: © The Author 2015. Published by Oxford University Press on behalf of ERA-EDTA. This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.or g/ licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com
Keywords: ESRD, dialysis, epidemiology, renal replacement therapy, transplantation
SGUL Research Institute / Research Centre: Academic Structure > Institute of Medical & Biomedical Education (IMBE)
Academic Structure > Institute of Medical & Biomedical Education (IMBE) > Centre for Clinical Education (INMECE )
Journal or Publication Title: Clinical Kidney Journal
ISSN: 2048-8505
Language: eng
Dates:
DateEvent
25 November 2015Published
Publisher License: Creative Commons: Attribution-Noncommercial 4.0
PubMed ID: 26798479
Go to PubMed abstract
URI: https://openaccess.sgul.ac.uk/id/eprint/107762
Publisher's version: https://doi.org/10.1093/ckj/sfv122

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