CTRL (Haas et al., 2021) is an open-source, web-based application that enables participants to give dynamic consent for how and where their genomic and health data is used. It aims to modernise and personalise the consent process in genomic and health research by allowing participants to make informed decisions and manage their preferences over time.
CTRL allows for flexibility in how information is presented to participants e.g. videos and infographics instead of traditional paper-based forms, to help improve consent literacy and enable participants to better understand how their information will be used. As a result, researchers may also benefit from better participant retention through improved engagement and communication.
The software can be customised to a project’s needs and integrated with external databases, such as REDCap, using bi-directional APIs that can push and pull data between the resources.
Key benefits of CTRL:
- Participants can review and update their personal details and consent preferences, at any time.
- Participants can make real-time decisions about the use of their genomic and health data, including for secondary research purposes.
- Participants can engage with research programs through interactive content such as videos and infographics.
- Participants receive ongoing information about how their data is being used and the progress of research studies they are involved in.
References:
- Haas, M. A., Teare, H., Prictor, M., Ceregra, G., Vidgen, M. E., Bunker, D., Kaye, J., & Boughtwood, T. (2021). ’CTRL’: an online, Dynamic Consent and participant engagement platform working towards solving the complexities of consent in genomic research. European Journal of Human Genetics, 29(4), 687–698. https://doi.org/10.1038/s41431-020-00782-w
Editor
Australian BioCommons / University of Melbourne
Editor
Australian BioCommons / University of Melbourne