Rare Voices Australia (RVA) is Australia’s peak body for rare diseases, advocating for the best outcomes for Australians living with a rare disease.
In line with the National Strategic Action Plan’s (the Action Plan) Research and Data Pillar, RVA supports the need for high quality collaborative research that is person-centred and positively impacts the lives of Australians living with a rare disease. Therefore, RVA welcomes genuine partnerships with groups planning or undertaking research that addresses the core principles as outlined in the Action Plan.
RVA’s Research Priorities
- Relate to or be transferable to a broad range of rare diseases.
- Respond to greatest unmet need in rare disease and/or address existing gaps.
- Involve coordinated and collaborative data collection that facilitates increased knowledge of rare diseases.
Read RVA’s Research Partnership Guidelines for more information.
National Alliance of Rare Disease Registries
Following the momentum generated by this article published in the Internal Medicine Journal in 2017, RVA has established a National Alliance of Rare Disease Registries (the Alliance).
Led and facilitated by RVA, the Alliance aims to promote person-centred best practice, encourage uniformity around key principles and commit to further developing a growing understanding of the national rare disease picture. The National Strategic Action Plan for Rare Diseases calls for a national approach to person-centred rare disease registries to support national standards, best practice and minimum data sets.
The Alliance has been initiated by an experienced group of rare disease researchers and clinicians, as a Sub-Committee for RVA. Its members include: Dr Paul Lacaze (Chair), A Clin/Prof Gareth Baynam, Prof Alan Bittles, Tiffany Boughtwood, Dr Tamera Corte, Prof Hugh Dawkins, Dr Lisa Ewans, Dr Aideen McInerney-Leo and Dr Zoe McQuilten. The Sub-Committee supports the use of recommendations for improving rare disease registries, from the global platform RD-Connect. The Sub-Committee is on-hold until 2021, please contact RVA with any enquiries you may have.
Several leading Australian rare disease registries and support organisations have already joined as members, including the Australian Cystic Fibrosis Data Registry and others (for a complete list of current members, scroll down).
Members of the Alliance will work together under a unified umbrella, committing to the following standards and principles outlined by RVA:
- Aligned with the guiding principles of RVA and the National Strategic Action Plan for Rare Diseases.
- Share registry best practice, expertise and resources where possible.
- Develop and use agreed minimum data sets.
- Contribute to the National Operating Principles Document for Rare Disease Registries.
- Embrace industry involvement and help to achieve economies of scale.
- Promote the collection of patient-centred quality-of-life data.
- Provide frameworks, tools and assistance for establishing new registries.
- Practice inter-operability and consider linking registries in related disease areas.
- Remain consistent with international best practices and rare disease networks.
- Work towards a nationally recognised process for ethics approval and consent.
- Consider future goals, such as a national rare disease biobank and database.
Registries are important clinical tools and powerful cost-effective instruments to support clinical trials and translational research that has the potential to improve quality-of-care, quality-of-life and survival.
Join the National Alliance of Rare Disease Registries
The strength of the Alliance will come from its members – your different opinions, and different experiences. We invite you to join the Alliance, and contribute to this discussion. No financial or data commitments are required.
If you are a rare disease registry owner/operator, support organisation or industry partner interested in joining the Alliance, please apply online or you can contact RVA and we’ll be in touch as soon as possible.
A list of current Alliance members can be seen below.