The Generation Study Process and Impact Evaluation
Study Overview
Genomics England and NHS England have established the Generation Study to deliver genomic newborn screening (gNBS) for 100,000 births in 2024/5 to explore the benefits, challenges, and practicalities of offering gNBS to parents in England.
The Process and Impact Evaluation research team has been funded by Genomics England to undertake an independent mixed-methods evaluation of the Generation Study. The evaluation will have oversight from a Study Advisory Group that includes academic, clinical and patient representatives and a Patient and Public Involvement and Engagement (PPIE) Advisory Group that includes members from parent and patient organisations and parents with relevant experiences. The Process and Impact Evaluation will examine whether offering gNBS in routine care is feasible and acceptable and inform our understanding of the clinical utility and cost effectiveness of gNBS.
Through surveys and interviews we will explore the attitudes and experiences of parents who have been offered gNBS and consider the clinical, psychosocial and health economic impacts, both positive and negative. The evaluation will consider a range of stakeholder stakeholder views, including parents, professionals, patient organisations and the public.
Our full protocol, can be accessed as a preprint on medRxiv.
Research Team
UCL
Dr Celine Lewis (PI) (celine.lewis@ucl.ac.uk)
Professor Pia Hardelid
Dr Ania Zylbersztejn
Professor Cecilia Vindrola-Padros
Katie Gilchrist
Sigrún Clark
Breaking Down Barriers- Alström Syndrome UK
Kerry Leeson-Beevers
Genetic Alliance UK
Dr Amy Hunter
Dr Jennifer Jones
Great Ormond Street Hospital for Children
Dr Melissa Hill (PI) (melissa.hill@ucl.ac.uk)
Bethany Stafford-Smith
Wing Han Wu