Review and audit of Australian Rare Disease Registries

RVA is seeking to partner with an appropriately skilled and experienced external consultant/ team to conduct an audit of Australian RD registries and compile a summary report on Australia’s RD registry landscape, referencing international best practice. The types of registries captured by the audit should be as inclusive as possible. RVA has previously developed a list of some of the key Australian rare
disease registries and has over 90 rare disease partner organisations to consult for this audit.