ARC’s involvement in research
ARC has always worked closely and collaboratively with healthcare professionals to help ensure the best possible care for expectant parents through antenatal testing and its consequences. In addition to our work directly with parents and healthcare professionals, ARC also gets involved in relevant research projects.
We collaborate in research to make sure we keep up to date with the latest developments, to maintain working relationships with expert clinicians and academics, and, most importantly, to ensure that research is of real benefit to expectant parents and families.
Our current research involvement includes participation in the EXPRESS and Understand projects.
EXPRESS: optimising the EXome PREnatal Sequencing Service
This is a major study by led Great Ormond Street and the Institute of Child Health. EXPRESS is evaluating the roll-out of a new genetic test, called prenatal exome sequencing, across NHS England.
Prenatal exome sequencing may be offered in pregnancy when scans suggest the baby may have a genetic condition that has not been or is unlikely to be diagnosed using standard genetic tests.
EXPRESS will explore parents’ views on and experiences of being offered prenatal exome sequencing. As part of our collaboration on this project, ARC has employed a research associate to gain an in-depth understanding of the parent perspective.
Our ARC researcher, Hannah, will be interviewing parents for EXPRESS to understand the information and support needs of parents offered this genetic test during pregnancy.
We are working with colleagues at Queen Mary, University of London and Barts Health on a research study called ‘Understand’ that aims to improve how health care professionals communicate difficult or unexpected news in pregnancy to women who have a mental health condition.