Chelsea and Westminster Hospital NHS Foundation Trust enrols more than 2,400 newborns for national study testing for 200+ rare genetic conditions

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Chelsea and Westminster Hospital NHS Foundation Trust has been running The Generation Study at both Chelsea and Westminster Hospital and West Middlesex University Hospital since July 2024.

The study, led by Genomics England, in partnership with NHS England, remains open for recruitment until the end of the year, aiming to screen up to 100,000 newborns in England for more than 200 rare but treatable conditions.

So far, the Trust has enrolled 2,440 babies into the study — 1,528 at Chelsea and Westminster Hospital and 912 at West Middlesex University Hospital. More than 1,721 samples have already been collected across the Trust from blood taken from the newborn’s umbilical cord shortly after birth.

This pioneering research aims to identify rare conditions earlier, enabling timely diagnosis and treatment that could slow disease progression or improve — and in some cases extend — a child’s life.

Expectant parents can speak with their midwife during pregnancy to learn more and decide if they would like to take part. Participation in the study is free and entirely optional.

Emily, who had her baby at West Middlesex University Hospital said: “We opted to take part in the Generation Study because the team at West Mid have been incredibly supportive through both of our pregnancies. Signing up was easy, and the whole process was also explained during an appointment, which gave us the chance to ask questions and talk everything through in detail. The results came through quickly – we received them a couple of weeks after our son was born.”