We understand that participants want to have more control over their involvement in research, so we are piloting a new online platform, which will allow you to choose more specific consent options and receive information about the research you are participating in.
This platform is called CTRL (“Control”)
If you’ve already agreed to participate in the Australian Genomics study and receive genomic testing, you will have signed one of our consent forms. As a part of the consent process, you would have talked through some of the unique aspects of having genomic testing compared to other more routine laboratory tests, as well as being asked whether you agree to share your samples and genome data.
We seek your permission to share this information with other people we do research with, for current and future research projects.
People that participate in CTRL will be able to use the platform to:
- keep their personal information up to date
- change their consent preferences for the Australian Genomics study
- choose the types of organisations that can use their information and what kinds of research they can do with it
- complete their patient surveys
- read news and information about the study, genomic testing and genetic conditions
- get in contact with the research team
By registering with the platform participants will also be kept up to date with Australian Genomics research and activities.