Twelve tips for setting up a national registry in South Africa: Principles and practice

Abstract

Background: Patient- and disease-specific registries provide valuable real-world data and often demonstrate greater generalisability compared to randomised controlled trials. A national thyroid surgery registry in South Africa (SA) can promote collaboration among surgeons nationwide, guide resource allocation, inform local guidelines, improve the quality of care, and support research. Although numerous global guidelines exist on creating and implementing disease registries, there is a paucity of data from SA. This study aimed to explore the perspectives and experiences of stakeholders to establish a national thyroid registry.

Methods: A qualitative study incorporated a survey and semi-structured interviews. Study groups included clinicians who (1) were recently involved in the Thyroid Cancer Group of SA (TCGSA) audit, (2) initially expressed interest in the TCGSA audit but could not participate, and (3) individuals who were involved in existing patient registries in SA. Participant perceptions and experiences with registries were discussed, and thematic analysis was performed on the transcribed data.

Results: Twelve practical recommendations were synthesised based on the participants’ perspectives. The twelve tips emphasise establishing independent, well-governed, and accessible registries that clearly communicate their goals, encourage clinician use, ensure confidentiality, provide support, and promote simplicity and incentives to drive effective participation. This study is unique as the tips provided are based on stakeholder surveys and interviews, rather than relying solely on a literature review.

Conclusion: Our findings reflect South African realities, including clinicians’ attitudes and administrative gaps, as well as experience-based tips. These stakeholder-informed, SA-specific recommendations can be adapted for use in other surgical disciplines aiming to establish a registry.