FAQs

The Transcatheter Aortic Valve Implantation (TAVI) Registry is a clinical quality Registry managed by the Australasian Cardiac Outcomes Registry (ACOR) Ltd to monitor procedural and clinical outcomes of patients undergoing aortic valve replacement via a transcatheter approach.

To contribute to the TAVI Registry, hospitals need to be approved for ethics and local governance. A Client Services Agreement outlines the obligations of both parties. Once Hospital Registration is completed and fees are paid, practitioners are provided with login credentials and application training. Data can be entered from this point.

The database developed by the ACOR TAVI Registry Steering Committee is based on the US registry, TVT, and adapted for local conditions. Feedback on the data being collected is welcome but at this stage there has been an initial finalisation to allow data collection and entry to proceed.

TAVI Practitioners who have been accredited by Cardiac Accreditation Services Ltd are required to contribute to the National TAVI Registry in accordance with the MBS TAVI item numbers.  Hospitals who do not have accredited TAVI Practitioners but are performing TAVIs may contribute data to the TAVI Registry.

The Client Services Agreement (CSA) details that, subject to clause 6.2(a), the Client (the hospital) retains all Intellectual Property Rights in the data submitted to the Registry. It further states that the Client grants to ACOR an irrevocable, nonexclusive, worldwide, perpetual, royalty free licence to use, reproduce, publish, communicate and adapt the data submitted to the Registry in accordance with the CSA for its purposes including to incorporate the data in ACOR’s reports and to aggregate that data with other data.

Individual clinicians may access aggregated de-identified data and data relating to themselves.
Hospitals (the Client) may only access their own data and aggregated de-identified data.
Patients have the right to request their data be removed from the Registry, corrected if there is an error or be provided with access to their data.

Publication of data
ACOR’s Research and Publications Committee oversees requests for publication and ensures fairness and equity.

Patients are given a handout explaining the purpose of the TAVI Registry and how their data will be used.  Patients can choose to opt out of the Registry at any time.

An application for TAVI data must be submitted, outlining the reasons and use of the data. The TAVI Research and Publication Committee reviews all data requests quarterly and decides on the outcomes of the requests. Please click here for more information pertaining to TAVI Data Access.

The ACOR TAVI database is hosted on REDCap and SAHMRI is working with each accredited hospital to facilitate the transfer of data. An excel spreadsheet is being developed to enable bulk data transfer.

The TAVI registry does not have government funding. The TAVI Registry is a “user pays” registry and all funds are expended on the development, running and maintenance of the Registry.
The commencement phase of the build was achieved via a donation from industry. The final development, ongoing running and maintenance together with the costs of running the Steering Committee, Project Manager’s time and associated expenses are covered via a hospital registration fee which is paid annually. ACOR appreciates that a number of practitioners already contribute to their own internal databases. Our Registry provider, SAHMRI, is working with each accredited practitioner and their accredited hospital to ensure the smooth transfer of data to the ACOR Registry.

2015:

• ACOR identified the need for a National TAVI RegistryThe CSANZ Interventional Council recommended experienced operators from all jurisdictions across Australia and New Zealand
• The ANZSCTS were involved in the early planning and represented on the Steering Committee by their President at that time, Prof Paul Bannon
• Acting Chair – Prof David Brieger;

2017:

• Nominations and election of Chair (Prof Darren Walters) and Deputy Chair (A/Prof Ajay Sinhal)

2018:

• Expressions of Interest called for two positions on the Committee. One for an senior accredited TAVI practitioner and one for a practitioner who is within 5 years of having commenced TAVI practice

The term of office is 3 years with the option of a second three year term. No member may serve for more than 6 consecutive years, however a member may serve in different positions on the Committee for a period exceeding 6 consecutive years.

For general information about the TAVI Registry or to apply to access data, email info@acor.net.au or phone 02 9226 7994. If you would like more information about the specifics of the TAVI Registry, contact the Registry Operator on 1800 290 571 (free call) or email acor-registry@sahmri.com.