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|Title: ||A renal registry for Africa: first steps|
|Authors: ||M. Razeen, Davids|
Eastwood, John B.
Selwood, Neville H.
Arogundade, Fatiu A.
Gharbi, Mohammed Benghanem
MacPhee, Iain A.M.
renal replacement therapy
|Issue Date: ||Oct-2015|
|Publisher: ||Clinical Kidney Journal|
|Citation: ||Clinical Kidney Journal|
|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 ERAEDTA
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|
|Description: ||This article is published in Clinical Kidney Journal and also available at doi: 10.1093/ckj/sfv122|
|Appears in Collections:||College of Health Sciences|
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