Congratulations to the research midwives and maternity teams at Southmead Hospital, North Bristol NHS Trust (NBT) and St Michael’s Hospital, University Hospitals Bristol and Weston (UHBW) who have each reached the milestone of supporting 1,000 babies and their families to take part in the Generation Study.
That makes a remarkable total of 2,000 babies and their families across Bristol NHS Group taking part in research to identify treatable rare conditions in babies earlier.
The Generation Study, a national research study, will sequence the genomes of 100,000 newborn babies to test for more than 200 rare and treatable genetic conditions.
The study is led by Professor Andrew Mumford and Tracie Miles at UHBW, and Dr Christy Burden at NBT.
For the research teams, working collaboratively across Bristol NHS Group – a partnership with UHBW – has brought a number of benefits. As the first site in the UK, UHBW pioneered the study rollout and enabled NBT to also be an early adopter and hit the ground running.
With two study sites, families across the whole of Bristol have a more equal opportunity to participate in the study, and there is increased diversity within the study population. Collaborative working between sites means that people who move their maternity care, or who deliver in one Trust but live in the catchment for another, do not miss the opportunity to take part.
The Generation Study, led by Genomics England in partnership with NHS England, will see parents offered whole genome sequencing using blood samples taken from the umbilical cord shortly after birth.
Identifying rare and treatable genetic conditions shortly after a baby is born, rather than when symptoms might appear later in childhood, means families can receive support, monitoring and treatment much earlier.
Early, effective intervention can help to prevent longer term health problems associated with certain conditions, keeping children out of hospital, and helping them live healthier lives.
The Generation study is completely voluntary. For more details or to take part, visit www.generationstudy.co.uk