Project Update - Perinatal Genomics Transformation Project
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(14 September 2023) The success of the fetal genomics transformation project has provided a springboard for our next phase of work – a focus on equity of access to perinatal genomics for often underserved families in the North East & Yorkshire region.

Building on Solid Ground

To successfully achieve this, the 23/24 Perinatal Genomics Transformation project has been designed around 3 workstreams:

 

Workstream 1

This first workstream is exploring how we can support the data collection methods used in the previous project to be embedded into Trusts to support local service planning and improvement. We also would like to evaluate some of the resources we designed and shared as part of the previous project.

Workstream 2

This second strand of our project involves working collectively with 2 local Trusts (Bradford & Middlesbrough) in our region to further explore equity of access to genomic services for pregnant women / people. Working with our Trust partners, we are looking to identify areas of best practice and then co-designing any changes to the current pathways.

Workstream 3

Our collaboration with National Congenital Anomaly & Rare Disease Registration Service (NCARDRS ) is focused on extracting information currently held to create ‘heat maps’ that will highlight the incidence of fetal anomalies across North East and Yorkshire.

Team Building & The Way Ahead

We’re really looking forward to welcoming new members to the project team. These include midwifery leaders from Bradford Royal Infirmary and James Cook in Middlesbrough, Angela Lightfoot, who worked on the 22 / 23 Project and is returning as our expert midwife, and Aliza Imam comes in as our clinical fellow.

This synergistic approach will help us to both shed light on, and provide further understanding of, the local challenges families face when accessing genomic services as they become relevant to them.

By identifying any barriers to accessing perinatal genomics, we will be able to develop the kind of focused approach that will allow people to access the information and support that is relevant to them.

If you would like to know more, please contact: Denise Barnes, Lead Midwife for Genomics – [email protected].