A renal registry for Africa : first steps

Davids, M. Razeen ; Eastwood, John B. ; Selwood, Neville H. ; Arogundade, Fatiu A. ; Ashuntantang, Gloria ; Gharbi, Mohammed Benghanem ; Jarraya, Faical ; MacPhee, Iain A. M. ; McCulloch, Mignon ; Plange-Rhule, Jacob ; Swanepoel, Charles R. ; Adu, Dwomoa (2016)

CITATION: Davids, M. R., et al. 2016. A renal registry for Africa: first steps. Clinical Kidney Journal, 9(1):162–167, doi:10.1093/ckj/sfv122.

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Article

ENGLISH 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 fi rst 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 fi ndings 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 fi rst 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

AFRIKAANSE OPSOMMING: Geen opsomming beskikbaar

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