Expressions of interest for AuSCR Data Custodianship
The Australian Stroke Clinical Registry (AuSCR) is a clinical quality registry which facilitates the standardised monitoring of acute care in hospital for stroke and transient ischaemic attack (TIA) to guide quality improvement efforts. Patient outcomes are also collected between 90-180 days following admission and information about deaths are obtained each year via data linkage. A secondary purpose of the registry is to facilitate research which requires committees to assess applications regarding the appropriate use of the data for answering different research questions. Currently, over 122,000 episodes of acute care have been documented in the AuSCR, with over 56,000 patient reported outcomes collected at 90-180 days post-stroke.
Data Custodianship of the AuSCR
Full utilisation and protection of AuSCR data, and data management processes, cannot be achieved unless the underlying data are acquired, maintained and managed in a coordinated manner. The AuSCR Consortium (The Florey Institute of Neuroscience and Mental Health [Stroke Division], The George Institute for Global Health, the Stroke Foundation and the Stroke Society of Australasia) use a coordinated information management model based on the appointment of a Data Custodian. The current AuSCR Data Custodian is the Florey Institute of Neuroscience and Mental Health.
The AuSCR Data Custodian is an eligible agency that:
- is responsible for collecting and maintaining AuSCR data in an appropriate manner;
- has the capacity to make AuSCR data readily and publicly available;
- can appoint a suitable individual to ultimately be responsible for data custodianship by this agency; and
- can provide, or acquire, sufficient financial and human resources to maintain AuSCR Office operations.
The AuSCR Data Custodian manages information as trustee in a partnership with national, state, regional and local AuSCR users to enable the integration of AuSCR information for the benefit of the entire community. All custodial activities must take place for the betterment of the whole stroke community rather than any individual agency. The overriding philosophy in all activities is one of a trustee acting in partnership for all consortium partners and AuSCR participants. AuSCR Data Custodianship appointments are for a term of up to five years.
This EOI is a targeted call for applications from organisations interested in applying for AuSCR data custodianship.
It is imperative that potential data custodians have the capacity to maintain, provide or acquire the necessary resources to manage AuSCR operations appropriately and sustain the functionality of the AuSCR Office in line with AuSCR policies and procedures. The final decision for AuSCR Data Custodianship will be made by the AuSCR Steering Committee, based on the recommendations of the AuSCR Data Custodian Working Group, who are appointed by the AuSCR Management Committee. The term of custodianship will be from 2022-2026. Decisions will be based on the information that you have provided to us, your previous and current experience with stroke and clinical quality registries, financial status and the ability to represent different stakeholder views.
For more information and instructions on how to apply for AuSCR Data Custodianship, please click on the link: AuSCR EOI Form
Expressions of interest should be received no later than 5pm on Friday 30 July 2021.
Professor Sandy Middleton
Chair, AuSCR Steering Committee
Professor Natasha Lannin
Chair, AuSCR Management Committee