Journal article
Evaluation of CTRL: a web application for dynamic consent and engagement with individuals involved in a cardiovascular genetic disorders cohort
MA Haas, EO Madelli, R Brown, M Prictor, T Boughtwood
European Journal of Human Genetics | Published : 2024
Abstract
There has been keen interest in whether dynamic consent should be used in health research but few real-world studies have evaluated its use. Australian Genomics piloted and evaluated CTRL (‘control’), a digital consent tool incorporating granular, dynamic decision-making and communication for genomic research. Individuals from a Cardiovascular Genetic Disorders Flagship were invited in person (prospective cohort) or by email (retrospective cohort) to register for CTRL after initial study recruitment. Demographics, consent choices, experience surveys and website analytics were analysed using descriptive statistics. Ninety-one individuals registered to CTRL (15.5% of the prospective cohort and..
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Grants
Awarded by Murdoch Children's Research Institute
Funding Acknowledgements
We acknowledge the individuals involved in the Cardiovascular Genetic Disorders Flagship who participated in this research, those who provided feedback on the study design, methodology and manuscript preparation, and the Australian Genomics Dynamic Consent Working Group. The authors would like to thank Dr Miranda Vidgen for feedback on the manuscript and Dr Harriet Teare, who contributed to the initial thinking behind the CTRL project, in her capacity as Deputy Director for HeLEX, Melbourne Law School.