Registry

The integrated end-stage kidney disease strategy of the International Society of Nephrology (ISN) recognises the importance of kidney health surveillance systems such as renal registries. Registry data is critical to inform the planning and delivery of services for comprehensive kidney care. In 2015, the African Association of Nephrology (AFRAN) established the African Renal Registry to collect, analyse and publish information on patients treated with chronic dialysis and transplantation. There are currently seven countries participating in this initiative: Botswana, Burundi, Ghana, Kenya, Nigeria, South Africa and Zambia.

The online data capture platform of the South African Renal Registry serves as the basis for the African Renal Registry. Data capturers interface with the central database via user-friendly web pages from any device that has internet access and password protection ensures that treatment centres have access to their own data only. Ethical approval has been obtained for this project. Patient confidentiality is respected, and only pooled data is reported. Data ownership resides with the nephrologists and nephrology societies of participating countries, who always full access to their own data at all times and are freely able to report their country-specific findings. Joint analyses and the reporting of combined data is the responsibility of the African Renal Registry Committee.

Links:
The development of the African Renal Registry – https://academic.oup.com/ckj/article/9/1/162/2462453?login=true
Strengthening renal registries and ESRD research in Africa – https://www.sciencedirect.com/science/article/abs/pii/S0270929517300025
The latest report of the Egyptian Renal Data System – https://afran.org/wp-content/uploads/2021/03/Egypt_ERDS-2019.pdf
The latest report of the South African Renal Registry – https://www.journals.ac.za/index.php/ajn/article/view/4458
Survival of South African patients on kidney replacement therapy – https://academic.oup.com/ckj/article/13/5/782/5780430?login=true
Embedding clinical trials in renal registries – https://www.journals.ac.za/index.php/ajn/article/view/3766
SHARing Expertise to support the set-up of Renal Registries (SharE-RR) – https://www.theisn.org/initiatives/data-collection/#SharE-RR

Enquiries:

Prof Razeen Davids (mrd@sun.ac.za) and Dr Vincent Boima (vincentboima@yahoo.com).