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.
Your form has been received.
National Alliance of Rare Disease Registries members
Quick search: A B C D E F G H I J K L M N O P Q R S T U V W X Y Z