New research, published in Thorax, funded by the Cystic Fibrosis Trust has shown that babies with cystic fibrosis (CF) are born weighing less than babies without the condition, even allowing that they are more likely to be born prematurely.

The University of Liverpool reports the research, conducted by CF-EpiNet, a Cystic Fibrosis Trust Strategic Research Centre (SRC), of which the University of Liverpool is a member, has shown that having cystic fibrosis results in lower average birth weight, revealing the need for further research into how cystic fibrosis affects the development of babies in the womb.

The research team compared babies born with and without cystic fibrosis using data on 2.2 million babies in Denmark and Wales. This research indicates that, while babies with cystic fibrosis are often born prematurely, this only accounts for around 40% of the effect on birth weight. This means that the cystic fibrosis mutation could also have an effect on the way babies develop within the womb. These results may be the first step to understanding and improving the health of babies with cystic fibrosis before they are born.

The findings further show that babies born to disadvantaged families are likely to have a lower weight at birth, regardless of whether or not they have cystic fibrosis. This indicates that the socio-economic inequalities in outcomes that occur in cystic fibrosis may start in the intrauterine period.

The CF-EpiNet SRC allows researchers to use and enhance the data within the Cystic Fibrosis Trust’s UK CF Registry to tell more about what happens when someone lives with cystic fibrosis. This study has used databases for Wales and Denmark to begin investigating the effects of socio-economic deprivation on outcomes in cystic fibrosis. These databases contain anonymous information from the whole population across these countries.

Poor nutrition and slow growth are common features in babies with cystic fibrosis, and both can have an impact on the lung function and survival of those babies in the future.

Rebecca Cosgriff, Registry Lead, said “Currently, we do not know how birthweight affects future health. The next stage of the research will be to link the databases used in this study with the UK CF Registry. This will add in more CF-specific information and may give further insight. A direct result of this study could be that birthweight is added to the data collected by the UK CF Registry from people with CF (or their guardians, if under 18) who choose to share it. By investigating the possible link between factors that cause low birthweight and adult health outcomes, we hope to be able to find ways to address these inequalities and give parents of babies with CF hope for a brighter future.”

Professor David Taylor-Robinson, Co-Principal Investigator, University of Liverpool, said “Our study shows the importance of data linkage for child health. Using datasets linked across different sources we could look at over two million children in two countries to show that CF has a large effect on birth weight, similar to the impact of maternal smoking during pregnancy. The results show that having CF impacts directly on intrauterine growth. More research is needed to understand the biological mechanisms for this, and to assess how birthweight predicts survival for people with CF. From a clinical perspective it is important to optimise support for children with CF right from the start of life. ”