Rare Voices Australia (RVA) has engaged Monash University clinical registry experts, Professor Susannah Ahern and Dr Rasa Ruseckaite, to undertake an audit of Australian rare disease registries, and databases available to Australian participants.
The National Strategic Action Plan for Rare Diseases (the Action Plan) identifies the key role that registries play in its Research and Data Pillar. The Action Plan was informed by an extensive multi-stakeholder consultation process. Click here to learn more about the rationale behind this work.
RVA has invited RVA Partners, known rare disease registry managers and RVA’s Round Table of Companies to take part in a short survey as part of this work. However, this survey is open to everyone who manages or has managed a rare disease registry that collects Australian data. If this applies to you, we would be grateful for your input.
To complete this survey, you will need the following information:
- The type of registry – clinician led/patient led/other
- The data your registry collects and from what jurisdictions or sites
- Who is responsible for maintaining and populating the registry
- How it is funded
- If your registry has ethics approval
- Registry governance
- Outcomes, barriers and enablers of the registry
With this information handy, it should take approximately 10 to 15 minutes to complete all the survey questions. If you wish to take part, please click on the link below.
If you have trouble accessing this link, please copy and paste it into your usual web browser.
Thank you for taking part. The results will be available in the first half of 2022.