Rare Voices Australia (RVA) and Monash University have published Recommendations for a National Approach to Rare Disease Data: Findings from an Audit of Australian Rare Disease Registries. The report includes the findings from the Australian Rare Disease Registry Audit project, led by Monash University registry experts, Professor Susannah Ahern and Dr Rasa Ruseckaite. Importantly, it also includes strategic recommendations and associated implementation priorities for a national approach to rare disease data.
As the national peak body for Australians living with a rare disease, RVA has played a pivotal role in overseeing this critical work in recognition of the importance of rare disease registries. See this article on RVA’s website for more background information about the Australian Rare Disease Registry Audit.
A nationally coordinated and systemic approach to the collection and use of rare disease data, including registries, is a key priority of the Australian Government’s National Strategic Action Plan for Rare Diseases. The strategic recommendations and implementation priorities detailed in the report are a critical step towards achieving this goal.
Next Steps
In response to this report RVA will:
- Communicate the findings and recommendations with all stakeholders and encourage all relevant stakeholders to progress timely implementation of the recommendations;
- Seek meetings with Commonwealth, State and Territory Governments across all departments, including the Department of Health and Aged Care and the Department of Social Services, to discuss timely implementation of the recommendations; and
- Work closely with experts, including researchers and registry managers, to progress timely implementation of the recommendations, where possible and necessary.
Orphanet Journal of Rare Diseases has published the first peer reviewed article based on the audit findings.
Acknowledgements
Thank you to the rare disease community for your genuine interest in this work and to all RVA Partner groups/organisations and registry managers who dedicated their time to participate in the consultation process. RVA would also like to acknowledge the important role of RVA’s Scientific and Medical Advisory Committee (SMAC) members, whose collective expertise, guidance and professional networks were key to the audit. Additionally, thanks to the RVA Round Table of Companies (industry representatives) for contributing to the co-development of the strategic recommendations and associated implementation priorities.
Download the Recommendations for a National Approach to Rare Disease Data
Rare Disease Data: Findings from an Audit of Australian Rare Disease Registries (PDF)
