1. What is the study about?

The Type 1 Diabetes Burden in South Africa is a collaborative research project conducted by the University of Pretoria, University of the Free State, Wits University, and the University of Cape Town. The study aims to determine how many people are living with type 1 diabetes in South Africa.

We are gathering online responses from individuals with type 1 diabetes across the country. This will form the foundation for establishing a Type 1 Diabetes Registry in South Africa.

2. Why does this study matter?

"We can’t fix what we can’t measure."

Currently, no accurate data exists on how many people in South Africa are living with type 1 diabetes, where they are located, or whether they’re receiving adequate care. This study is the first step to identifying these key details, which will help improve care and resources for people living with type 1 diabetes.

3. Who owns the data I provide in this study?

The data collected will not be owned by any single entity.

The University of Pretoria, as the study’s custodian, will ensure the data remains safe and secure. All responses will be anonymized, meaning your name or personal identifying information will not be attached to your answers.

4. What happens after the study?

This study is part of a larger vision to create a Type 1 Diabetes Registry in South Africa, in collaboration with research organizations (e.g., University of Pretoria, University of the Free State, Wits University, University of Cape Town) and civil society groups (e.g., Diabetes Alliance, SA Diabetes Advocacy, Sweet Life).

If you consent, the anonymized data collected during this study may contribute to this future registry. Your data will never be sold or used for purposes other than this research. You will also be contacted for explicit consent before your data is integrated into the registry.

5. I still have questions—who can I contact?

Please email Dr. Patrick Ngassa Piotie, the Principal Investigator from the University of Pretoria, at [email protected].