UCL Great Ormond Street Institute of Child Health


Great Ormond Street Institute of Child Health


LCFC Background

The London Cystic Fibrosis Collaboration (LCFC) was formed in 1998 and carries out respiratory research into Cystic Fibrosis (CF) in children.

The London Cystic Fibrosis Collaboration (LCFC) was established in 1998 by Professor Janet Stocks, Professor Carol Dezateux, Professor Andrew Bush and Professor John Price, and has been continuously supported by peer-reviewed funding. Since its formation, the LCFC has recruited infants with Cystic Fibrosis (CF) born in South-East England, with the aim of improving our understanding of the evolution of early lung disease by undertaking objective assessments of lung function and structure commencing shortly after diagnosis.  All five specialist paediatric CF clinics within the Thames region participate in the LCFC, namely: Barts and the Royal London Hospital, King's College Hospital, Royal Brompton Hospital, Great Ormond Street Hospital and University Hospital Lewisham. This expanded to include St Heliers and Epsom hospital when we embarked on the study of newborn screened babies in 2009. The establishment of the LCFC, has proved to be a major breakthrough, demonstrating the power of collaboration over competition when the interests of children are put centre-stage.

The monitoring and treatment for children with CF has changed dramatically in recent years. Most importantly, since 2007 all infants in the UK are now screened for CF shortly after birth, most infants are diagnosed prior to developing any symptoms. To reflect these changes, the LCFC has recruited two separate cohorts of children with CF, each with their own set of local, prospective healthy controls; the first was based on clinically diagnosed infants recruited between 1999-2002 while the second, was based on subjects diagnosed by newborn screening (NBS), and recruited from 2009.

First Cohort

Cohort 1 images

Starting in 1999, we recruited infants shortly after they had been diagnosed with CF as a result of symptoms or failure to thrive (clinical diagnosis), since at this time newborn screening had not been introduced throughout the entire UK. This clinically diagnosed group of children were followed through infancy, the pre-school years and while at primary school. A group of healthy infants born during the same era have also been followed up in a similar manner. By studying the way in which the lungs grow and develop in healthy children, we are better able to detect early changes of lung disease in those with CF.
These children were most recently followed up as teenagers when aged 13 to 18 years old

Second Cohort

Cohort 2 image

The second group recruited between 2009 - 2011 were infants with CF who were diagnosed by newborn screening via the heel prick blood test, which was introduced in London in 2007.
These infants were assessed at 3 months, 1 year and 2 years of age together with a second group of healthy infants who were born during the same period. 
These children were most recently followed up as pre-school children when aged 3 to 6 years old.

We are most grateful to all the children and families who contribute to our research programmes.

Current Research Activity

Both of these studies (clinically diagnosed and newborn screened) are still on-going. We recently finished the latest stage of follow-up data collection and are currently analysing the data for both studies. Please see the publications page for details about research already published. More data will be released over the coming years. 

lung function at different ages