Data Request Workflow
HeSANDA
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SHP and the NHMRC Clinical Trials Centre (CTC) at the University of Sydney lead the Sydney Node Project of the Health Studies Australian National Data Asset (HeSANDA) program.
What is HeSANDA?
HeSANDA is a program of the Australian Research Data Commons (ARDC) that is building the national infrastructure required to support the sharing and reuse of health research data in a way that would bring value to the research community, increase the efficiency of research, and provide benefits for the health of Australia’s population.
The program is starting with a focus on sharing and re-using data that has been collected through investigator-initiated clinical trials, but hopes to expand to include other types of research data in the future.
What is Health Data Australia?
In 2024, HeSANDA launched Health Data Australia (HDA), a national catalogue of Australian clinical trials data that researchers have submitted for potential access and reuse.
Clinical trial data are not stored on HDA. Instead, the platform enables the data owners to provide and share descriptions of the data (‘metadata’) to improve discoverability. In addition to metadata, data owners provide other documentation describing the dataset, such as study protocols and data dictionaries.
The organisations responsible for the original clinical trials retain control of the data and with whom it is shared. HDA uses a standardised workflow for tracking and responding to data requests, while still allowing data owners to apply their own specific governance requirements for approving access to data.
What is the SHP-CTC Node
Nine local nodes (clusters of research organisations) are supporting the development of the HeSANDA initiative, including the SHP-CTC/Sydney Node (see Figure below).
To date, the SHP-CTC Node has contributed to the development of HDA and has established both the technological and administrative infrastructure required to facilitate the sharing of clinical trial metadata from the SHP-CTC node into HDA.
To enhance the findability and accessibility of clinical trial study data, the SHP-CTC node has implemented the following::
Benefits of Data Sharing
The benefits of securely sharing clinical trial data for secondary use are manifold, including fostering richer datasets, inspiring new research questions and hypotheses, and conserving resources by reducing duplication. Watch the below videos from the Australian Research Data Commons (ARDC), Australia’s leading research data infrastructure facility, and find out more about:
Benefits of Data Sharing
What is Health Data Australia?
Setting up a New Clinical Trial for Data Sharing
Why is Metadata Important for Research?
Managing Data Requests
The data request workflow below outlines the data infrastructure components that the Federation Service, Nodes and ANZCTR provide as part of the HeSANDA system. More information about discovering and requesting access to clinical trial data using Health Data Australia is available here, or you can watch the video.
How Can You Contribute?
If you are a Principal Investigator who is interested in learning more about sharing your clinical trial data, please contact us (via email): hesanda.shp-ctcnode@sydney.edu.au (link opens in a new window)
To register your clinical trial in Health Data Australia, please complete this form.
Funding
The Sydney node of the HeSANDA project received investment (doi.org/10.47486/HS002) from the Australian Research Data Commons. The ARDC is funded by the National Collaborative Research Infrastructure Strategy.