NATIONAL ALLIANCE OF RARE DISEASE REGISTRIES
Following the momentum generated by this article published in the Internal Medicine Journal 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 aims 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.
The Alliance has been initiated by an experienced group of Rare Disease (RD) researchers and clinicians, as a Sub-Committee for RVA. It supports the use of recommendations for improving RD registries, from the global platform RD-Connect.
Several leading Australian RD 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, please see below).
Members of the National Alliance of RD Registries will work together under a unified umbrella, committing to the following standards and principles outlined by RVA:
• Aligned with the guiding principles of RVA
• 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 RD biobank and database
As outlined in our Call for a National Rare Disease Framework: 6 Strategic Priorities, RVA’s vision sees the National Alliance of RD Registries encouraging collaboration and sharing knowledge and best practice. Registries are important clinical tools and powerful cost-effective instruments to support clinical trials and translational research which have the potential to improve quality-of-care, quality-of-life and survival.
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.
By registering your organisation with the Alliance:
Existing RD registry operators:
• You will contribute to the development and implementation of registry standards and share your expertise with other established – or developing – RD registries
• You will work with other Alliance members and RVA to build a national strategy and foundation for RD registries, with the aim of attracting federal investment for Registry sustainability
• You will participate in the discussions on the feasibility and value of a National RD Database and Biobank Network, and whether this will be appropriate for Australia, and of benefit to members
Individuals and groups interested in starting new RD registries:
• Access to a database of registries that are already operating in Australia (to avoid duplication of effort)
• Complimentary access to practical registry tools, templates, standard-operating-procedures, advice and support from an experienced team to help build a registry
• Access to specialised registry services via a dedicated Registry Science Unit (e.g. ethics, recruitment, data management, registry best practices etc.)
• Assistance with access to funding opportunities, Government and industry links
Rare disease patient groups:
• Learn more about the value and benefits of RD registries, to your community and to the broader RD system in Australia
• Assess whether a new registry, or link with an existing registry, would be most appropriate and advantageous
• Be part of registry governance, through patient representation
• Ensure input into the National RD registry strategy, including with Government
• Have a say in how registry data is used to support research and policy, to improve the lives of people with RD
• Help build a better National picture of RD in Australia, via data registries
• Ensure RD registries meet Government requirements, priorities and outputs
• Have direct access to clinical and scientific leaders operating Australian RD registries
• Use RD registry data to support evidence-based health services and policy
• Partner with RD registries to support long-term RD research
• Help develop new research initiatives, including around data sharing and biobanking
• Help connect appropriate Australian research groups with RD registries
• Foster international collaborations and data sharing to support research into RD
• Help build and improve Australian RD registries to deliver industry benefits
• Have your needs/preferences directly communicated to RD registry operators
• Facilitate more trials and access to therapies for Australian RD patients
• Be partners in improving the overall RD landscape in Australia
If you are a RD registry owner/operator, support organisation or industry partner interested in joining the Alliance, please complete the form below and we’ll be in touch as soon as possible. A list of current Alliance members can be seen below the form.
We also encourage you to attend the RVA 2018 Rare Disease Summit on Friday 16th and Saturday 17th November 2018 in Melbourne. At the Summit, there will be two dedicated sessions on the Alliance, where more information and future goals will be discussed.
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National Alliance of Rare Disease Registries members
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