Ever heard of The Generation Study?
Dive into this article explaining what the study is aiming to achieve and find out how MSUK has been involved in informing the information sheets given to families in case of a suspected positive diagnosis.
An Introduction to The Generation Study
The Generation Study is a research study aiming to sequence the genomes of 100,000 newborn babies across the UK using whole genome sequencing. Its primary goal is to detect rare genetic conditions early in life, offering the potential for improved diagnosis and treatment within the NHS.
Run in partnership between the NHS and Genomics England, the study focuses on evaluating whether genome sequencing can enhance the NHS’s ability to identify and manage genetic conditions. It covers 200 specific conditions, all of which were selected because they typically present in early childhood but can be treated effectively if diagnosed promptly. Many of these conditions are Inherited Metabolic Disorders (IMDs).
The study is now underway, with hundreds of blood samples collected from newborns across 13 hospitals, and it is set to expand to 40 hospitals as it scales up.
Metabolic Support UK and The Generation Study
As part of the Generation Study, Metabolic Support UK has provided guidance and feedback on all IMD-specific information sheets which are given by specialist teams to the family of a newborn whose result comes back as being suspected of having one of these conditions.
These sheets are a vital part of conveying the results to the family, containing an appropriate level of information and signposting to relevant support organisations. They aim to support the family with basic understanding and to support them to safely access further trustworthy information and support.
Stay informed & get involved in our survey
Metabolic Support UK will be keeping you updated about The Generation Study via our social media and on our website, we’ve even developed a web page specifically for it. We’re also running a short survey to gather people’s thoughts and experience on The Generation Study.
Interested in either of these areas? Check them out by clicking the buttons below:
