Digital technologies are increasingly being sought to manage the research consent process. CTRL is a secure web-based application that gives research participants the opportunity to engage more with a research program, update their personal details and choices about being involved in research, and take the lead in decision-making about secondary use of their genomic and health information.
CTRL also benefits research organisations. Electronic consent records replace paper and are more easily retrieved, it is interoperable with study databases like REDCap and manages permissions for secondary use of data using internationally endorsed standards.
CTRL has undergone recent upgrades and is now freely available to be adopted by the research community.
Access a demonstration version of CTRL using the generic Study ID on the registration page: A1234123
See full instructions for access.
Read the dynamic consent evidence summary.
Read the European Journal of Human Genetics paper on how we designed and developed CTRL
Watch a video walkthrough below.
Assurance of digital assets
For CTRL to be successful, it must be trusted and accepted by participants in healthcare research, the public, and research organisations. To identify any risks that may impact that trust, CTRL was evaluated in the form of an assurance of digital assets (ADA) report. Australian Genomics partnered with DNV Group Research and Development (GRD), Healthcare programme to test the value of and refine the ADA framework using CTRL as a use case.
The overall aim was to further develop the ADA framework such that it supports the development of an assurance case for CTRL, by identifying and closing substantial trust gaps that may further support the successful implementation and scale of CTRL. The project findings are now available to download below with more information on the DNV website.
Contact
Matilda Haas