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, Valentia and Gift-Surg 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.
VALENTIA: Valuing the benefits and harms of antenatal and newborn screening programmes in health economic assessments
This study is being led by researchers at Oxford University. It aims to help policy makers understand how to assess whether screening programmes provide value for money in relation to the outcomes for parents and families. In other words, how do we best put a ‘cost assessment’ to the different outcomes for parents and families that can result from screening tests provided before and just after babies are born.
GIFT-Surg: Guided Instrumentation for Fetal Therapy and Surgery
This is an international research project developing technology, tools and training to make fetal surgery possible for certain conditions that can be diagnosed in pregnancy: spina bifida, twin-to-twin transfusion syndrome and congenital diaphragmatic hernia.
ARC is a member of the Patient and Public Advisory Group for GIFT-Surg. As part of this group, we provide feedback that helps the team shape their research around parents’ needs and develop clear and thorough patient information.
We have also collaborated on a public engagement project on this research and a project on developing ultrasound https://www.kcl.ac.uk/news/workshops-explore-the-publics-views-on-scanning-and-surgical-innovations-in-pregnancy
As part of our involvement in research, we are often asked if we can invite people ARC has supported to participate.
If you are interested in taking part in research through ARC, perhaps by filling in a questionnaire, being interviewed or being part of a focus group, do let us know by emailing firstname.lastname@example.org.
We are always interested in supporting and taking part in research that seeks to improve care for expectant and bereaved parents in the context of antenatal screening and diagnosis. If you are a researcher interested in working with ARC, please get in touch at email@example.com.