The Generation Study: Meet the Regional Results Co-Ordinators

The Generation Study aims to transform the way we screen, diagnose, and treat newborn babies with rare conditions. With over 200 rare conditions included in screening as part of the research study, it will position the UK’s newborn screening programme among the best in the world.

In the North Thames Genomic Medicine Service, we are working collaboratively with NHS England and Genomics England to ensure that families are supported through the process.

At the forefront of this effort are Dominic Studart and Yvonne Muwalo, Generation Study Regional Results Co-Ordinators. Their role is essential in ensuring that “condition suspected” results are effectively communicated and that babies and their families receive the support they need as they move into specialist care.

From genomic data to patient care

As Regional Results Co-Ordinators, Dominic and Yvonne act as a vital link between Genomics England and NHS specialists. When a genomic research test suggests a potential condition in a newborn, they:

• Identify the right specialist teamwithin the NHS.
• Ensure rapid referralsfor further testing and early intervention.
• Support families, making sure they receive timely information and care.
• Help specialists reach familiesif there are communication challenges.
• Collect outcome data to refine and improve the study’s impact.

Their work ensures that every result leads to action, helping newborns get the best possible care as quickly as possible.

Behind the scenes: Making the study work

Setting up such a large-scale study requires meticulous planning. Dominic and Yvonne, along with their teams, have been working on:

• Engaging with specialist teams to establish referral pathways and named clinicians.
• Conducting meetings to discuss the study, address questions, and refine processes.
• Formalising Standard Operating Procedures (SOPs) to streamline result management.
• Running process walkthroughs with Genomics England to test result feedback mechanisms.
• Collaborating with other Regional Results Co-Ordinators (RRCs) and the study sponsor to share learning and best practices.
• Working with recruiting sites to align processes and improve result communication.

These efforts are critical in ensuring a smooth and efficient result-handling process once the study is fully underway.

A study that will change lives

The Generation Study is more than just research — it represents a significant leap forward in newborn screening. Dominic, Yvonne, and the wider team are excited to be part of this groundbreaking initiative, working to ensure that every result leads to action. Their efforts help turn pioneering research into real-world impact, making a lasting difference for generations to come.

To learn more about the study, please visit the Generation Study website.