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The Generation Study Process and Impact Evaluation

Study Overview 

generation study process and impact evaluation
                                             

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 

Queen Mary University of London 

Dr James Buchanan
Dr Martin Vu

Warwick Medical School 

Professor Felicity Boardman