A registry cohort of 4959 New Zealand patients with moderate or severe rheumatic heart disease (RHD), with onset of disease by 2019, has been established. Initial presentation was RHD without recognised prior acute rheumatic fever in 41% of cases, and acute rheumatic fever in 59%. Ethnic disparities have changed significantly over time, with Europeans making up 64.3% of cases prior to 1960, but only 10.7% of cases between 2010 and 2019. In contrast, Māori made up 25.3% of cases prior to 1960 and 37.4% of cases between 2010 and 2019. Corresponding percentages for Pasifika cases are even more dramatic at 6.7% and 47.2%, respectively. Overall, 64% of the cohort had undergone at least one cardiac intervention (cardiac surgery, transcatheter balloon valvuloplasty), at a mean age of 40 years, and 19.8% had undergone multiple interventions. At the latest follow-up, 26.9% of the cohort had died. Māori- and Pasifika-led governance groups for the registry have been established, and data will be available for future studies in patients with RHD.
