Rare Voices Australia and Research: 2023 in Review

RVA News

Rare Voices Australia’s (RVA) role in identifying evidence gaps and proactively partnering with researchers and other experts to address unmet areas of need in research continued growing throughout 2023. Our research work aligns with the priorities, actions and implementation steps in the Research and Data Pillar of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan).

Rare Voices Australia Research Partnerships

RVA received over 16 requests for partnerships from rare disease research teams across Australia in 2023 making for another busy year for RVA Research Partnerships. Twelve RVA Research Partnership requests were for RVA involvement on Medical Research Future Fund (MRFF) grants, and one was on a National Health and Medical Research Council grant. At the time of writing, 4 RVA Research Partners have been selected for funding, and 5 are yet to be announced.

Throughout 2023, RVA has also been actively involved in several RVA Research Partnerships established in previous years. RVA’s roles on these projects range from involvement on steering committees and advisory groups, to document review and co-design. RVA offers researchers broad rare disease stakeholder knowledge and consumer expertise as the national peak body for Australians living with a rare disease, including a strong track record in effective rare disease advocacy and policy influence.

RVA’s Research Partnership Guidelines have also undergone two reviews this year, and we have a new online Research Partnerships Proposal form for researchers to request a partnership. This new process aims to encourage researchers to engage with the Action Plan and increase transparency around how RVA partners with researchers. Through this more streamlined and transparent workflow, RVA will have greater capacity to actively participate in research.

For more information on RVA Research Partnerships and to access the form, please visit the Research Partnerships page on RVA’s website.

RVA Research Reports

This year, RVA published several evidence-based reports progressing different areas of the Action Plan. RVA acknowledges the collective efforts of all those involved in the development of the following reports. RVA will continue to use these reports in its systemic advocacy to drive the best outcomes for Australians living with a rare disease.

National Strategy for Australia’s Rare Metabolic Workforce

Recommendations for a National Approach to Rare Disease Data

2023 Status Report: Implementing the National Strategic Action Plan for Rare Diseases

Rare Voices Australia’s broader influence on Australian health and medical research funding for rare diseases

RVA has built strong relationships with the Health and Medical Research Office (HMRO) through active contributions to discussions around the future governance and administration of the Medical Research Endowment Account and the MRFF. This included a written response to the public consultation, and an invitation to join a range of stakeholders from universities and institutions to share rare disease peak body perspectives at a roundtable in Brisbane in August. For more information about this work, please visit this news article on RVA’s website: Rare Voices Australia’s Submission on the Future Governance and Administration of Australian Health and Medical Research Funding.

RVA has also built relationships with the MRFF Clinical Trials Activity Scheme leads, prompted by an independent evaluation of this grant opportunity. More information about the evaluation and RVA’s response is available in this news article on RVA’s website: Evaluation of the Medical Research Future Fund Clinical Trials Activity Final Report.

RVA is committed to maintaining strong relationships with the HMRO to encourage greater investment in rare disease research and clinical trials and increase the uptake of relevant grant schemes intended to support the efforts of Australian rare disease researchers.

Other work

Aside from formal RVA Research Partnerships, RVA has shared recruitment materials for several research projects, and actively contributed rare disease expertise to a variety of research reports, documents and consultations. These include:

  • Feedback on the Australian Clinical Trials Alliance’s recommendations for ‘Advancing clinical trial engagement, involvement, and participation for people from culturally and linguistically diverse backgrounds’
  • Feedback on and endorsement for the final Stakeholder Report from the MRFF funded A-GLIMMER study on genetic testing and life insurance
  • Feedback on and endorsement for the Australian Health Practitioner Regulation Agency’s (AHPRA) public consultation on their draft Interprofessional Collaborative Practice (IPCP) Statement of Intent
  • Submission to the public consultation on proposed revisions to Section 4 of the National Statement on Ethical Conduct in Human Research
  • Feedback to the Australian Commission on Safety and Quality in Health Care’s Draft Quality Standards for Institutions and Human Research Ethics Committees under the National Mutual Acceptance Scheme
  • Feedback on and endorsement for Involve Australia’s Guidelines for Community Involvement in Genomic Research