Unlocking the value from publicly funded Clinical Research Data

6 Mar 2019
Canberra
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CSIRO and the Australian Research Data Commons (ARDC) are seeking to engage with the medical research community in developing a ‘National framework for capturing value from clinical data’.

Australian invests a large amount of money in clinical trials, cohort studies and registries each year. In the main, once the research has been completed these data sets lay dormant, inaccessible and isolated with significant untapped latent value. With the accelerating advances in harmonised data and analytics further investment in expanding the digital infrastructure can realise significant additional value from these datasets

Given the emerging opportunities for rethinking clinical trials, cohorts, meta-analyses, registries, therapeutic guidelines and new science and technologies emerging in a dynamic and networked data-driven world, it has been suggested that a nationally supported approach to data storage, enhanced access, curation, provenance, standards, analysis, sharing and reward systems, while protecting privacy, might contribute positively to the health research community.

CSIRO and the Australian Research Data Commons (ARDC) will be running workshops to understand the current environment, investigate this premise, and if appropriate build a research-community-led alliance and develop a ‘National framework for capturing value from clinical data’, to guide further infrastructure, research and community activity.

There will be one workshop in Canberra on 6 March 2019 from 9:30am to 3:30pm AEDT, and potentially another mid 2019 to be announced.

These workshops are consultations aimed ONLY at:

  • research funders
  • research institutions
  • peak medical research bodies
  • national infrastructure providers
  • research leaders in the clinical trials and cohort studies community
  • key opinion leaders

For more information about the project please see the project proposal.

Please note that space is limited for this workshop, and registration via Eventbrite may not guarantee a place.

For further information about the workshop please contact Kate LeMay at ARDC, kate.lemay@ardc.edu.au.