Queensland University of Technology Advances Global Research on Rare Diseases Using the AWS Cloud

Development of the TRRF system has received funding by both nonprofit organizations and national competitive funding schemes, including MTPConnect and the National Health and Medical Research Council. Operating on a strict budget requires the eResearch@QUT team to cost-effectively manage the TRRF’s scalability, security, and compute capacity to support the global AS registry. 

Professor Matthew Bellgard, director of eResearch at QUT and TRRF project lead said, “Working with Amazon Web Services (AWS) to host our open-source digital platform has helped the team to continually apply optimizations reducing the total cost of ownership and improve the overall security posture of the platform.”

The platform has also opened the possibility to launch registries for other rare diseases, faster. Bellgard, who also currently chairs the Asia Pacific Economic Community Rare Disease Network, mentioned that the eResearch@QUT DevOps team can now deploy a complete registry for other research projects within hours compared to days, prior to working with AWS.

eResearch@QUT housed the AS registry in an Amazon Virtual Private Cloud (Amazon VPC) to secure patient information. AWS WAF was added to Amazon VPC to monitor and block web traffic that may pose a threat to the platform.

“With multiple layers of security and, in particular, AWS’s service level agreement of up to 99.99% uptime, we are assured of protecting the patient data we collect, and meeting the stringent data handling and governance guidelines of Australia and other countries,” shared Bellgard.

eResearch@QUT selected Amazon Relational Database Service (Amazon RDS) with Amazon Aurora Serverless to deliver high availability, compute performance, and scalability of its databases. For added efficiencies, the eResearch@QUT team deployed Amazon Elastic Container Service (Amazon ECS) on AWS Fargate which helped eliminate the management of virtual machines, and made it easier for the team to focus on application development, and automate the deployment of new registries.

Bellgard shared that the TRRF is applicable across all clinical care settings. As the digital research platform is cloud-based, it acts as a central coordinating data repository, which can be accessed by patients, clinicians and researchers from any device. This allows for current and convenient information sharing, closer engagement between patients and clinicians, and ultimately, improved patient care.

Most recently, the TRRF has been deployed to establish the first Australian patient and clinical Australian Motor Neurone Disease (MND) registry through the MiNDAUS partnership. This is a national collaboration of clinicians and scientists, consumer advocacy groups, and consumers to improve person-centered care for people living with MND by providing data-driven policy direction in health care and research. Associate Professor Paul Talman, clinical lead of the MiNDAUS Registry shared, “The TRRF allows us to move from a rather static state where researchers obtain snapshots of data at any given timepoint to a more dynamic health care tool that the patients control.”