The New Zealand Rheumatic Heart Disease Registry

Abstract

Background: Acute rheumatic fever (ARF) has been extensively chronicled in New Zealand. Huge ethnic disparities continue. In contrast, the burden of chronic rheumatic heart disease (RHD) in New Zealand is not well defined. Some surgical outcomes are known and there is data about RHD in pregnancy. Beyond that, morbidity, access to care, adherence to care, and the quality of medical and surgical care are poorly defined. Aims:•To create the first New Zealand wide contemporary cohort of significant RHD to be known as the NZ RHD registry. This will better define the morbidity and mortality of RHD.•To establish a governance group for the NZ RHD registry•To plan retrospective and prospective studies of RHD outcomes Methods: This NZ RHD registry will be populated utilising surgical, echocardiographic and outpatient databases, cross-referencing with ARF registries, ICD hospital discharge and National mortality data. Results: Major funding from the Heart Foundation. Data managers recruited. Collaborating investigators established in all NZ cardiac units. HDEC approval July 2017. Enrolment in the registry has commenced. 850 cases enrolled, pre-dominantly from ADHB data sources by March 2018. Conclusion: The first phase of the New Zealand Rheumatic Heart Disease Registry is now well established. This large study will involves all the cardiac units of New Zealand. The establishment of such a cohort/registry will be a platform to increase understanding of the true morbidity of significant RHD, allow comparisons to the NZ Heart Foundation Guidelines for RHD, and explore inequities by age, region and ethnicity.