Establishing a Rheumatic Heart Disease Registry in Ethiopia Based on the ARGI

Abstract

Ethiopia faces a significant burden of RHD, which leads to substantial morbidity and mortality, particularly among children and young adults. However, comprehensive, region-specific data on RHD demographics, disease characteristics, treatment practices, genetic susceptibility, and long-term outcomes remain limited. Drawing inspiration from the ARGI, this proposal outlines the establishment of an RHD registry within Ethiopia to address this critical data gap and guide targeted strategies for prevention and management.

The registry will enroll all patients diagnosed with RHD across various healthcare settings, including hospitals, clinics, and community outreach programs. Comprehensive data will be collected on demographic characteristics, history of ARF, patterns and severity of valvular involvement, treatment adherence (including penicillin prophylaxis and anticoagulation), and the occurrence of adverse events. 

Implementation of the RHD registry will involve a phased approach, starting with pilot sites at leading cardiac centers and gradually expanding to other regions of Ethiopia. Key steps will include the training of healthcare professionals on RHD diagnosis and treatment and the establishment of referral networks to ensure comprehensive patient enrollment.

The registry will generate comprehensive, contemporary data on the burden of RHD, which will inform evidence-based policies and resource allocation for RHD control. It will also enable the identification of risk factors for RHD progression and adverse outcomes. Additionally, the registry will serve as a platform for conducting research on RHD and contribute to reducing the burden of RHD, improving the health and well-being of affected individuals, and strengthening the healthcare system's capacity to address this significant public health challenge.