Instagram star helps pioneering study to reach 5000 babies in Manchester

A ground-breaking research study to help identify and treat rare genetic conditions in newborn babies has reached a major milestone with the recruitment of its 5000th baby at Manchester University NHS Foundation Trust (MFT).

The Generation Study, which is led by Genomics England in partnership with NHS England, offers whole genome sequencing testing for newborn babies to help identify more than 200 rare genetic conditions that can be treated early in life.

The study is aiming to recruit 100,000 families nationwide, including parents like Madeline Dann who welcomed a baby boy into the world in December at Wythenshawe Hospital (part of MFT).

Madeline is a doctor working in Emergency Medicine who is also a successful online content creator posting as ‘Maddy Lucy Dann’. She shares advice on health and wellbeing and has helped to raise awareness of The Generation Study via her online presence. She said:

“I was very motivated to be a part of the study as I love science and know the importance of willing participants in research. On a selfish level, I also saw it as a way to gain extra (free!) testing for my baby, especially in light of the recent media attention for cases of Spinal Muscular Atrophy (SMA), I knew this was something that myself and my partner were incredibly keen for.

“I felt nervous when I was made aware that the results were back, however I know that they contact you differently and sooner should a result flag as positive.

“I was impressed that the results came back much sooner than I anticipated and incredibly reassured and relieved to learn that no abnormalities were detected. I was and am very pleased to be a part of this study that has not only benefited me but also going forward will benefit many others too.”

Recruitment for the Generation Study at MFT began in November 2024 and is currently active across three hospitals in Manchester: Saint Mary’s Hospital, North Manchester General Hospital, and Wythenshawe Hospital. All three sites are part of MFT, which is the largest NHS trust in the UK and a national leader in genomic medicine.

Natasha Hall, Research Midwife at Manchester University NHS Foundation Trust, said: “We are delighted to have reached this fantastic milestone which shows the dedication of our team to help share this vital study with the families we support.

“By helping to build one of the largest newborn genomic datasets in the world, we are laying the foundations for earlier interventions and more personalised care for children and their families.”

Dr Amanda Pichini, Clinical Director at Genomics England, said: “The Generation Study aims to develop critical evidence on whether genomic newborn screening should be offered to all children – which we hope can help to do more for the thousands of children born every year in the UK with a treatable genetic condition.

“With their permission, participants also help us to support broader healthcare research, so our knowledge improves and we can identify more conditions and treatments. Only approved researchers from approved institutions will have access to this consented data – without knowing babies’ identities – to safely conduct important research and make new health discoveries.”

Recruitment remains open at the three MFT sites, and families giving birth at these hospitals and wanting to take part should speak to their care team to find out more.

All parents will receive a result, and most babies will not be found to have any of the gene changes known to cause the genetic conditions in the study. However, for the small number of babies who are found to have a condition the impact could be lifechanging.

The study abides by a rigorous data protection process to ensure you and your babies’ identity will be protected. The data collected is stored in a secure database, called the National Genomic Research Library, where genetic and health data from thousands of people is accessed for research. This data will be de-identified, provided with consent, and can only be accessed by approved researchers.

You can find out more about how your data will be collected, stored, and used as part of the Generation Study here.