Rare Voices Australia and Research

In line with the National Strategic Action Plan for Rare Diseases’ (the Action Plan) Research and Data Pillar, Rare Voices Australia (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. You can read more about RVA’s Research work here. RVA welcomes genuine partnerships with groups planning or undertaking research that addresses core principles outlined in the Action Plan.

Please note: from 6/2/2023, RVA is pausing offers of in-kind support to research proposals, until further notice. RVA will still consider budgeted contributions to research projects that align with RVA’s Research Partnership Guidelines.

Research Priorities

Relates to or is transferable to a range of rare diseases, and is collaborative and person-centred
Responds to unmet need in rare disease and/or addresses existing gaps
Involves coordinated and collaborative data collection that facilitates increased knowledge of rare diseases
Can ultimately be translated into clinical care. Clinical care informs research, innovation and policy

What RVA Can Bring to Your Research Project:

A person-centred approach to research co-design and implementation
A conduit to patient groups relevant to your research
Assistance with convening focus groups to facilitate meaningful consumer engagement
Access to a wealth of experience in rare disease advocacy and policy influence
Support for leveraging external grant funding for rare disease research
Opportunity to work with the peak body for Australians living with a rare disease on both a specific research project and as an ongoing RVA Partner

What Your Group May Bring to RVA:

A genuine partnership to ensure the best outcomes for the rare disease community
Opportunity to contribute to state-of-the-art research to improve the lives of those living with a rare disease
Opportunity to provide a patient voice to rare disease research in Australia

Read RVA’s Research Partnership Guidelines in full.

National Alliance of Rare Disease Registries

Following the momentum generated by this article published in the Internal Medicine Journal in 2017, RVA established the National Alliance of Rare Disease Registries (the Alliance) in 2018. 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. The Action Plan calls for a national approach to person-centred rare disease registries to support national standards, best practice and minimum data sets.

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. It was initiated by an experienced group of rare disease researchers and clinicians as a Sub-Committee for RVA in 2018. The Sub-Committee is currently on-hold.

Several leading Australian rare disease registries and support organisations have joined the Alliance as members, including the Australian Cystic Fibrosis Data Registry and others (for a complete list of current members, scroll down).

Members of the Alliance have agreed to 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 person-centred quality-of-life data
Provide frameworks, tools and assistance for establishing new registries
Practice interoperability 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