Rheumatic heart disease (RHD) results from repeated attacks of acute rheumatic fever (ARF). Together, ARF and RHD are the leading cause of acquired heart disease in children in the world, affecting 15.6 million people worldwide. ARF is closely related to a preceding streptococcal pharyngitis which, if left untreated, carries up to a 3% risk of causing ARF. The pathogenetic mechanisms are largely unknown; studies suggest that host factors may play a role in individual susceptibility to ARF.

Advancements in molecular biology have necessitated the need for establishing biorepositories. Storage of biological samples with linkage to accurate clinical and epidemiological information will enable the determination of the role of genetic and non-genetic factors’ interaction in determining ARF/RHD, the knowledge of which could aid in patient management.

In the report, we present our approach to developing a biorepository and data management procedures (including transfer agreements concerning confidentiality, use, and security of specimens and associated data; authorship and dissemination of research results, and ownership of future intellectual property) with discussion of the challenges needed to be considered in establishing such a bank. We also discuss the development of guidelines for specimen collection, processing, and storage in the context of participant confidentiality.

To our knowledge, no biorepository currently exists for RHD, and thus our intention was to create a resource to serve as a long-term national and international resource for the study of RHD. We anticipate that the biorepository will facilitate collaborative cross-disciplinary research as, and when, newer technologies become available and affordable.