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NATIONAL ALLIANCE OF RARE DISEASE REGISTRIES

Following the momentum generated by this article published in the Internal Medicine Journal 47 in 2017, Rare Voices Australia (RVA) has recently established a National Alliance of Rare Disease Registries.


Led and facilitated by RVA, the National Alliance of Rare Disease Registries helps to promote patient-centred best practice, encourage uniformity around key principles and commit to further developing a growing understanding of the national rare disease picture.


All member organisations of the National Alliance of Rare Disease Registries work together under a unified umbrella and have committed to the following standards and principles outlined by RVA:


  • Aligned with the guiding principles of RVA
  • Share registry best practices, resources and expertise 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 Q of L data
  • Define frameworks for establishing new registries
  • Link registries in related disease areas and practice inter-operability
  • Remain consistent with international best practices and rare disease networks
  • Work towards a nationally recognised process for ethics approval and consent, biobanking etc.

As outlined in our Call for a National Rare Disease Framework: 6 Strategic Priorities, RVA’s vision sees the National Alliance of Rare Disease Registries as encouraging collaboration and sharing knowledge and best practice. Registries are critical clinical tools and powerful cost-effective instruments to support clinical trials and translational research that improves quality of care, quality of life and survival.


If you are a rare disease registry owner/operator considering becoming a member, please fill out the below form and we’ll be in touch as soon as possible.


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By submitting the above information, you certify that you have the authority on behalf of your relevant institution to apply to become a member of the National Alliance of Rare Disease Registries. Please allow up to 7 business days for your application to be considered. Should you wish to remove your institution’s logo/support at any time, please register your request via this email address: communications@rarevoices.com.au

 

National Alliance of Rare Disease Registries members

 

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