The Ark project was established within the Centre for Genetic Origins of Health and Disease at The University of Western Australia (UWA) in late 2009 to develop an open-source platform to support Australian and international biomedical researchers. The Centre for Epidemiology and Biostatistics, University of Melbourne and the Lions Eye Institute joined the project as collaborators in 2010 and 2014 respectively.
The project aims to provide a secure, highly-configurable web-based research tool that incorporates the majority of the functionality required to conduct a complex study or clinical trial, or operate a research registry. The Ark allows medical researchers without a technical background to self-manage their data using a customisable, user-friendly interface without the need for database/computer programming. Since The Ark is a web-based application, it is accessible from locations worldwide using a web browser, a standard piece of software bundled with most modern desktop, tablet and smart phone operating systems.
The Ark's study details screen
To date, the project has delivered a Java-based solution that allows users to:
- create and configure studies and sub-studies
- define users and manage their roles and access permissions
- define and manage a research participant pool including demographic data
- define custom fields and arrange them into categories
- define and manage the collection of phenotype research data
- dynamically generate Electronic Data Capture (EDC) forms
- manage biospecimens and the associated data using an integrated Laboratory Information Management System (LIMS)
- model and visualise pedigree structures, and manage family data
- manage study work requests, including billing
- filter and extract data for analysis
- generate customisable reports.
The Ark is a production ready system that is currently used by very large medical research projects. These include:
- lifepool, an NBCF/Cancer Australia funded study of women attending BreastScreen Victoria comprising over 52,000 participants
- The West Australian DNA Bank, which hosts over 100,000 samples for studies of various diseases in approximately 30,000 people
- The Australian Inherited Retinal Disease Register and DNA Bank and the Pan-Australian Ophthalmic Biobank which manages over 42,000 biospecimens and 186,000 questionnaire responses, with 34 research users over six sites across Australia
- The Fremantle Diabetes Study comprising approximately 3,400 participants with over 91,000 biospecimen records.
- Bickerstaffe A, Ranaweera T, Endersby T, Ellis C, Maddumarachchi S, Gooden G, White P, Moses EK, Hewitt AW, Hopper JL. (2016). The Ark – a customizable web-based data management tool for health and medical research. Bioinformatics, vol. 33, no. 4, pp. 624−626.
- Ranaweera T, Makalic E, Hopper JL, Bickerstaffe A. (2018). An open-source, integrated pedigree data management and visualization tool for genetic epidemiology. International Journal of Epidemiology, vol. 47, no. 4, pp. 1034–1039.