The South African Renal Registry
Information for dialysis and transplant patients
What is the Registry all about?
The Registry is an information database established by the doctors of the South African Renal Society. Maintaining a renal registry is common practice in many countries across the world. We collect information on all dialysis and transplant patients in South Africa in order to get a complete picture across the country. This will help us plan and improve the treatment of patients with kidney failure. We will produce regular reports and research papers on the data collected – this will be made freely available.
The Registry is managed by a Registry Committee who reports to the SA Renal Society. We have formal approval from the Health Research Ethics Committee of Stellenbosch University, who will provide ongoing ethical oversight and monitoring.
What information is collected?
The information collected includes your name, age, gender, hospital of treatment, some aspects of your medical condition (such as whether you have diabetes) and details about the kidney treatment you are receiving (dialysis or transplant). We DO NOT collect details about your home address, telephone number, medical insurance, or non-medical matters such as occupation, income, etc.
Are there any risks involved for me?
There are no medical risks. The only risk is the accidental disclosure of your medical data. We will do our best to minimize this risk by following strict procedures for capturing and storing your data securely. No unauthorized people will be able to gain access to any personal information about you. Any reports based on the registry will summarize many different patients’ data and will never identify you by name.
Your address and telephone numbers will not be captured. Your name and ID number needs to be recorded to enable your follow-up data to be linked together. Further processing of your data after the initial capture will only be done after we remove all your personal information. This will protect your identity. There are no additional costs to you and no extra laboratory tests involved – only information which is already being captured by your doctor or dialysis unit is used.
What if I have more questions?
Speak to your doctor or dialysis unit manager, who will be fully informed about the Registry. You can also contact our Registry Manager, Nicola Marais, via email at firstname.lastname@example.org or by telephone on 078-8005947.