Invitation to participate in research to inform the development of Best Practice Guidance for the management of pregnancy loss where there are fetal anomalies with a likely genetic cause

WHO

• Maternal and Fetal Medicine consultants and Obstetricians with a special interest in Fetal Medicine
• Clinical Geneticists with an interest in Prenatal Genomics
• Perinatal Pathologists
• Clinical Scientists with an interest in Genomics
• Bereavement Midwives

WHAT

The North-East and Yorkshire Genomic Medicine Services Alliance is hosting the NHSE-funded Maternal and Fetal Genomic Transformation Project. This project aims to reduce variation in access to genomic testing for mothers and birthing people during pregnancy and pregnancy loss.

You are invited to participate in online surveys as part of a modified Delphi study, and to provide an opinion on aspects of pregnancy care related to fetal loss, bereavement and genomic investigations.

It is estimated that the total time commitment for this project will be up to 4 hours over a 3-month period. You may withdraw at any time by contacting the research team.

WHEN and WHERE

The study will be completed between October 2022 to January 2023. Initial results will be sent out to participants prior to publication in early 2023. Surveys will be completed online via the eDelphi platform.

WHY

Currently there is a great deal of variation in genomic testing offered to women and families who suffer a pregnancy loss with a possible genetic cause. There is no guidance about the most appropriate genetic test, referral pathway, or how follow up in future pregnancies should be organised and offered. We seek opinions from interested stakeholders to support the development of Best Practice Guidance in this area of practice.

HOW

Please email the Project Lead Dr Abigail Hyland for more information abigail.hyland@nhs.net by 20^th October 2022