The objective of DPAU is to support researcher access to data from multiple Contributing Research Studies (CRS) and enable new insights into ageing, ageing-related diseases and dementia risk, with the aim of transforming the epidemiology of ageing and dementia.
The challenges posed by dementia are undeniably complex. Addressing them requires many smaller pieces of a puzzle to come together to increase our understanding of brain function and of the risks that genetic factors and life events pose to healthy brain ageing. While the contribution of one research participant, one researcher, or one study, is often modest, the ability to combine data across many studies has a potential not yet fully realised. DPAU is collecting and aggregating CRS data on physical and brain health collected from research participants, health services and government agencies. It provides an efficient and auditable process for securely storing, sharing and analysing sensitive data to accelerate the understanding of dementia and improve diagnosis and treatment.
Utilising the template developed by our partner, Dementias Platform UK (DPUK), and Secure eResearch Platform (SeRP) technology deployed at Monash University, DPAU provides a platform to:
enhance data discovery functionality,
provide high-quality data curation,
mediate data access via an auditable and efficient approval process adaptable to be compliant with any relevant governance requirement,
provide secure data transfer function and reduce the need for continued data transfer between research groups, and
provide virtual workspaces for analysing data.
DPAU hosted on Monash SeRP provides an environment operating to the highest data protection standards, meaning research participants and researchers can be confident that the data are managed securely and responsibly, thereby maintaining privacy whilst maximising scientific value. Monash SeRP is a secure, trusted and scalable environment for data sharing, governance, control and management services for researchers. For studies conducted in Australia, DPAU provides an opportunity to share Australian data without the potential risks associated with sharing data outside of the Australian jurisdiction.
Initially, DPAU will facilitate access to “flat-file” data only, but we recognise the significant potential of sharing of more complex imaging and genetics data within and across studies. Combining data across multiple disciplines has already yielded unique and valuable insight into biomarkers and biological pathways relevant to the risk for, and diagnosis and progression of, dementia. The aim of DPAU is to next expand our capability to include the deposit and analysis of imaging and genetics data in the online environment.
DPAU is envisaged to complement the DPUK and other satellite dementias platforms around the globe. While a distributed set of platforms can assist in retaining data sovereignty, they also have the potential to open up even further the sharing of research data across platforms within a common SeRP virtual workspace.