REGISTRY

The South African National Dialysis And Transplant Registry

What is the Registry all about?

The Registry is an information database established by the doctors of the South African Renal and Transplantation Societies. It is managed by a Registry Committee, headed by our Registry Manager, who reports to the SA Renal and Transplantation Societies. Maintaining a registry is common practice in many countries across the world. We are collecting 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 has been approved by the Health Research Ethics Committee of Stellenbosch University, who will provide ongoing ethical oversight and monitoring.

What information is collected?

This information includes your name, age, gender, hospital of treatment, some aspects of your medical condition (such as whether you have diabetes) and details about the type of kidney treatment you are receiving (dialysis or transplant).

We DO NOT collect details about your address, telephone number, medical insurance, or nonmedical 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 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.

In future, if a researcher wishes to study aspects of kidney disease through our Registry that requires doing any extra tests, this will first need separate approval by an Ethics Committee.

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 visit the Registry Web page at www.sa-renalsociety.org/Registry.asp or you may contact our Registry Manager, nephrologist Dr Julian Jacobs, on tel. 021-5954040.