REMEDY

Despite the staggering burden of RHD disease and the subsequent complications in those affected by RHD, no contemporary data exist documenting the presentation, clinical course, complications and treatment practices among patients with RHD. Recent reviews have bemoaned the fact that these data either do not exist from Sub-Saharan Africa, or are not of high-enough quality to be included in systematic reviews.

The Rheumatic Heart Disease Global Registry (REMEDY) was recently launched with a view to bridging this knowledge gap. In the first instance this registry will involve sites from Africa, Middle East and Asia in an attempt to document contemporary practise and identify risk factors and possible areas of intervention. Initial results from REMEDY demonstrate a significant hospital-based burden of disease as well as huge deficits in secondary prophylaxis and anticoagulation strategies and reinforce the need for political commitment and urgent action.

The Cape Town registry will form part of an international collaboration under the auspices of the A.S.A.P. (Awareness, Surveillance Advocacy and Prevention) Programme. The purpose of this registry is to collect data on demographic and clinical profiles of patients with RHD in Cape Town. It is  important to ascertain whether differences in patient characteristics in communities have clinical relevance especially as regards outcomes, since this may impact upon management strategies within different communities and age groups. The registrywill highlight deficiencies in service delivery to the most at risk patients and therefore guide in the initiation of more specific interventions. Priority-based guidelines to evaluate and manage patients with severe, moderate and mild disease have previously been published and the registry will enable specific performance indicators to be reviewed in line with these guidelines.The computerised register of cases of RHD will be used to improve treatment adherence in order to prevent recurrent RF and the development of RHD. It will serve as an epidemiological tool for gathering detailed echocardiography information for the purpose of research, compiling reference ranges and guiding the development of protocols and guidelines to improve secondary prophylaxis adherence.