Video raises awareness of Generation Study’s multi-language accessibility
Seventeen healthcare professionals from across the country have helped produce a multi-language video promoting a world-leading research study which is helping to detect more than 200 rare genetic conditions in newborns.
Created by the Central and South Genomics team, it raises awareness of the Generation Study which is sequencing 100,000 babies to find early disease, in diverse communities.
The study is led by Genomics England in partnership with NHS England and the video was created to ensure the study is accessible for as many people as possible.
It features healthcare professionals discussing the study in their native tongue or their second language. Spanning employers across the country and a range of healthcare roles, all participants volunteered their time and translation skills for this exciting project. Languages include Arabic, Farsi, Romanian, Polish, French and Italian.
Rupa Modi, Senior Clinical Research Practitioner at University Hospitals of Leicester NHS Trust, featured in the video speaking Gujarati, said: “It was rewarding to contribute to an initiative that promotes accessibility and inclusivity in research.
“Providing information in multiple languages is essential for our diverse workforce and patient population, and I am proud to support efforts that expand access to research nationwide.”
As of June 2026, the study has enrolled more than 60,000 participants. In most cases, participants won’t be found to have any suspected conditions, but for those cases where a condition is discovered, the impact can be life changing.
One such child is baby Freddie, who was diagnosed with retinoblastoma, a rare form of eye cancer, through the study. Around 44 children are diagnosed with retinoblastoma every year in the UK, with early detection crucial for preserving vision.
But, when there is no known family history, diagnosis often comes later, once symptoms have progressed. Very shortly after his diagnosis, Freddie was able to start treatment at our Children's Hospital, one of two specialist centres that treat retinoblastoma in the UK. He’s undergone a mix of chemotherapy and laser treatment to treat the tumours in his eyes and will receive monitoring and specialist care for the foreseeable future.
Part of the NHS Genomic Medicine Service, Central and South Genomics is responsible for coordinating and delivering genomic testing for a region with a patient population of around 12 million. The team help to embed and coordinate the study across their region, with both a midwife and a project manager working on the study.
You can find out more about the study by visiting www.generationstudy.co.uk.
Watch the video here www.youtube.com/watch?v=ZIH1lEt1_Bk