title: A renal registry for Africa: first steps.
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.
authors.affiliation: Division of Nephrology , Stellenbosch University and Tygerberg Hospital , Cape Town , South Africa.
authors.forename: M Razeen
authors.initials: MR
authors.lastname: Davids
authors.affiliation: Department of Renal Medicine , Institute of Medical and Biomedical Education, St. George's, University of London , London , UK.
authors.forename: John B
authors.initials: JB
authors.lastname: Eastwood
authors.affiliation: The Oaks, Tower House Drive, Lowbands , Gloucestershire , UK.
authors.forename: Neville H
authors.initials: NH
authors.lastname: Selwood
authors.affiliation: Department of Medicine , Obafemi Awolowo University , Ile Ife , Nigeria.
authors.forename: Fatiu A
authors.initials: FA
authors.lastname: Arogundade
authors.affiliation: Department of Internal Medicine & Specialties , University of Yaoundé I , Yaounde , Cameroon.
authors.forename: Gloria
authors.initials: G
authors.lastname: Ashuntantang
authors.affiliation: Nephrology Department, Faculty of Medicine , University Hassan II , Casablanca , Morocco.
authors.forename: Mohammed
authors.initials: M
authors.lastname: Benghanem Gharbi
authors.affiliation: Research Unit 12ES14 and Nephrology Department , Hedi Chaker University Hospital , Sfax , Tunisia.
authors.forename: Faiçal
authors.initials: F
authors.lastname: Jarraya
authors.affiliation: Department of Renal Medicine , Institute of Medical and Biomedical Education, St. George's, University of London , London , UK.
authors.forename: Iain A M
authors.initials: IA
authors.lastname: MacPhee
authors.affiliation: Red Cross War Memorial Children's Hospital and University of Cape Town , Cape Town , South Africa.
authors.forename: Mignon
authors.initials: M
authors.lastname: McCulloch
authors.affiliation: School of Medical Sciences , Kwame Nkrumah University of Science and Technology , Kumasi , Ghana.
authors.forename: Jacob
authors.initials: J
authors.lastname: Plange-Rhule
authors.affiliation: Division of Nephrology and Hypertension , University of Cape Town , Cape Town , South Africa.
authors.forename: Charles R
authors.initials: CR
authors.lastname: Swanepoel
authors.affiliation: University of Ghana and Korle-Bu Teaching Hospital , Accra , Ghana.
authors.forename: Dwomoa
authors.initials: D
authors.lastname: Adu
keywords: ESRD; dialysis; epidemiology; renal replacement therapy; transplantation