New Report: Independent Evaluation of the Generation Study: Views of support organisations

We’re pleased to share Genetic Alliance UK’s new research report, Independent Evaluation of the Generation Study: Views of support organisations.

The Generation Study aims to sequence the genomes of 100,000 babies to test for over 200 conditions – and to inform future policy around newborn screening. The Generation Study is ongoing and is being independently evaluated by a team of academics and our own researchers at Genetic Alliance UK. 

Our report draws on this research and presents the experiences of rare condition support organisations. It explores how these organisations have engaged with the Generation Study to date, how prepared they feel to support families, and what is required to enable them to fulfil their role effectively.

Full findings from the evaluation – including the views of parents and healthcare professionals, health economics and the clinical impact – will be published once the Generation Study is complete.

Please email [email protected] if you have any questions.