Review and audit of Australian Rare Disease Registries

Project: Research

Project Details

Project Description

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.
StatusActive
Effective start/end date2/08/2131/05/22

Funding

  • Rare Voices Australia Ltd: AUD50,000.00

Keywords

  • Australian Rare Disease Registries
  • audit
  • Monash Clinical Registries