Parent and patient involvement
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:
The PPIAG has played an important role in the interviews we have conducted with parents who have been offered prenatal exome sequencing. They have:
• 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.
Watch the animation below to learn more about prenatal sequencing and why parents might be offered this test in pregnancy:
The PPIAG has played an important role in the interviews we have conducted with parents who have been offered prenatal exome sequencing. They have: