SAHMRI Registry Centre

A Centre of Excellence for Registries and Registry Science
SAHMRI Registry Centre

About the SAHMRI Registry Centre

The SAHMRI Registry Centre was established in 2018 to bring together the registry science and operational expertise available among our research community, to ultimately strengthen the Institute’s existing role in the registry space and expand our research capacity and training in this area.

The Centre brings together a collaboration of registries, including those based within SAHMRI and member registries based externally. The collaboration includes some of Australia’s most significant national registries, bringing together a wealth of experience and knowledge.

In doing so, the Centre provides for increased quality, efficiency, and cost effectiveness, maximising the value of the contributions and advancements made by member Registries. It also works on enhancing the capacity of researchers, both within and external to SAHMRI, by driving improvements in the quality of care and health outcomes for all Australians.

SAHMRI's Registry Centre provides an important and rich source of translational and observational research data. Well-designed registries, particularly at the population level, form the ‘third pillar’ of scientific research in conjunction with clinical trials and laboratory work. The SAHMRI research community believes population-based studies founded by leveraging the information available in registries can represent the most reliable option for identifying the actual ‘real-world’ effects of interventions, treatments and outcomes in the general population.

The SAHMRI Registry Centre will provide a platform to enhance the enormous value of registry data, supporting the utilisation of other important data sources such trials, surveys, biobank data, administrative data sets, and information systems, through data linkage and research collaborations.

The Registry Centre supports the vision statement outlined by the Australian Government Department of Health in The National Clinical Quality Registry and Virtual Registry Strategy 2020-2030: "National clinical quality outcomes data are integrated into Australia’s health care information systems and systematically drive patient-centred improvements in the quality and value of health care to achieve better patient outcomes across the national health care system."

The Clinical Quality Registry (CQR) Advisory Service

This is a national service currently being piloted by the SAHMRI Registry Centre. The project, funded by the Department of Health and Aged Care, under the National Clinical Quality Registry Program, supports the delivery of several projects with a central focus on promoting best practice and communicating health outcomes to the public.

The CQR Advisory Service is able to provide advice and support in the following areas:

  • General enquiries from individuals or organisations considering establishing a CQR, assistance to determine if a CQR is an appropriate response.
  • Advice and tools to assist establishment of a new CQR
  • Advice and support regarding further development of existing registries seeking to move their registry closer to meeting the requirements of the Australian Framework for National CQRs
  • Advice and guidance for CQRs seeking to undertake more advanced activities such as registry nested trials, data linkage studies, international collaborations and comparisons, strategic planning, audit review.

For enquiries please contact the SAHMRI Registry Centre at registrycentre@sahmri.com.

Learn more about the SAHMRI Registry Centre

View our resource centre for major documents and important reports

Resource Centre

Read the latest Registry Centre news and media highlights

News & Media

Registry Centre Members & Groups

Registries that form the SAHMRI Registry Centre encompass a broad range of health topics including aged care quality and safety, joint replacement, kidney dialysis and transplants, cerebral palsy and other birth defects, spinal injuries, cancers and many other health issues.

Registry Centre Structure

SAHMRI-based registries

  • SAHMRI Registry Centre

    Registry of Senior Australians (ROSA) Research...

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  • SAHMRI Registry Centre

    Australia and New Zealand Dialysis and...

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  • SAHMRI Registry Centre

    Australian Particle Therapy Clinical Quality...

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View all Registry Centre members here

Registry Science

Registries are important databases that house uniform information related to specific diseases, conditions, demographics, interventions, or other unifying parameters for a specific cohort for a specific purpose. This information, which can include diagnoses, procedures, treatment pathways and outcomes, facilitates observational studies that can enable improvements in health care delivery and health policy.

Registry science is the required methodological, analytical, and other infrastructure required to operate, evaluate, and innovate using registries. A broad knowledge and skill set contributes to the operation of quality registries and facilitates their ability to impact health outcomes. These include structures such as good governance, ICT security and quality data management infrastructure, as well as complex project management expertise, a high level of clinical domain knowledge and academic research skills.

SAHMRI Registry Centre Activities

The Centre coordinates monthly Statistical and Analytical Educational Forums to provide an opportunity for knowledge sharing and learning. These meetings are open to statisticians and others interested in the analysis and reporting of registry data. If you would like to know more about the monthly forums, please email your enquiry to registrycentre@sahmri.com

The Centre coordinates quarterly workshops which include a variety of invited speakers of local, national or international significance who can contribute important learnings in registry science. The workshops are open to all interested parties. The workshops are hybrid nature providing both face to face and online access. For more information or the workshop schedule please email your enquiry to registrycentre@sahmri.com

SAHMRI CE CoP’s primary objective is to support registries in launching their consumer engagement work or to maintain the efforts already begun. The CoP would promote collaboration on consumer engagement activities and create a shared learning environment for registries within SAHMRI. The CoP activities are organised and led by ANZDATA and HTSA.

Join the SAHMRI CE CoP

Key objectives for the SAHMRI CE CoP:

  • Seeking and sharing experiences among the registries in terms of consumer engagement
  • Identifying local knowledge and gaps in consumer engagement
  • Sharing consumer engagement resources among the registries
  • Learning from national and international developments in consumer engagement

The Annual Symposium is designed to bring together individuals working in the Clinical Quality Registry (CQR) sector, researchers, consumers and other relevant stakeholders with an interest in advancing registry science and maximising the potential of CQRs in Australia.

For further information or to participate in these activities email RegistryCentre@sahmri.com

Strategic Director

  • Cindy Turner

    Cindy Turner

Joint Academic Leaders

  • Professor Maria Inacio

    Professor Maria Inacio

  • Professor Stephen McDonald

    Professor Stephen McDonald

Governance

A collaborative funding arrangement between South Australian Health and Medical Research Institute (SAHMRI), Australia & New Zealand Dialysis & Transplant Registry (ANZDATA) and the Registry of Senior Australians (ROSA) supports the SAHMRI Registry Centre. The SAHMRI Registry Centre Strategic Director works closely with the SAHMRI Executive Director, SAHMRI Registry Centre Advisory Group, and SAHMRI-based Registries on the activities of the Centre.

The Centre provides support and expert advice across several domains:

  • Registry Structure and Governance
  • ICT platform and software development
  • Data Management support/services
  • Analytical support/services
  • Potential collaborations and partnerships
  • Access to SAHMRI Facilities to support the work of the Registry Centre
  • Development and establishment of new Registries

Purpose

The purpose of the SAHMRI Registry Centre Advisory Group is to advise and provide guidance on the work of the SAHMRI Registry Centre, specifically in the achievement of its key goals:

  • Provide access to the best resources for building registry research, translational and technical capacity.
  • Lead registry science initiatives through collaborative opportunities for our scientists.
  • Develop strong national, international and industry collaborations.
  • Continue to support a shared learning environment within our organisation.
  • Become a leading national and international Registry Centre

Function

The Advisory Group is comprised of representatives of each member Registry, and performs the following functions:

  • Guides the direction and strategy of the SAHMRI Registry Centre.
  • Provides expert methodological and content area leadership for SAHMRI Registry Centre activities.
  • Promotes registry science and registry best practice within the Registry Centre, nationally, and internationally.
  • Strengthens the profile of the SAHMRI Registry Centre nationally and internationally.
  • Provides guidance on activity-related priorities and consensus on the selection of activities for the SAHMRI Registry Centre.
  • Contributes to the establishment of networks and fosters collaborations with other Registry Centres nationally and internationally.
  • Generates and assists with dissemination of reports associated with SAHMRI Registry activities.
  • Contributes to other meetings, forums and reports produced external to the Registry Centre.

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