Parent and patient involvement
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The voices of parents are central to the EXPRESS study.
o We have Two PPI expert co-applicants funded on the study.
o We have a researcher based at Antenatal Results and Choices (ARC) who helps provide an in-depth understanding of parent experiences.
o We have an active and engaged PPI advisory group (PPIAG) made up of representatives from a number of parent and patient support organisations:
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The PPIAG has played an important role in the interviews we have conducted with parents who have been offered prenatal exome sequencing. They have:
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• Helped to shape the questions we ask parents,
• The researcher based in a patient organisation has facilitated a greater understanding of what parents face when having to make decisions around testing,
• Advised on recruitment methods and supported the design of parent newsletters, and
• Played a key role in the development of an animation about prenatal sequencing that has been informed by two pieces of work that have come out of the EXPRESS study.
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Watch the animation below to learn more about prenatal sequencing and why parents might be offered this test in pregnancy:
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The PPIAG has played an important role in the interviews we have conducted with parents who have been offered prenatal exome sequencing. They have:
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