Welsh researchers, funded by Health and Care Research Wales, are giving expectant mothers living with Cystic Fibrosis (CF) new hope for managing cystic fibrosis through pregnancy and beyond.

Dr Jamie Duckers, Research Lead for the All Wales Adult Cystic Fibrosis Service, and Health and Care Research Wales Respiratory Specialty Lead, has lifted the lid on the findings of a study, CF-PROSPER, which was aimed at collating data on pregnant women living with Cystic Fibrosis to track their outcomes and understand how they and their children were affected.

Dr Ducker said: “As healthcare professionals it was difficult to answer with accuracy many of the questions posed by women with CF about becoming parents, as many of the studies were in small numbers of women with CF or very outdated.

“The idea behind the RFPPB grant that we were awarded was to collate all of the UK registry data, instead of looking at the experiences of one or two people with CF who were pregnant.

“We also looked at the US registry data to understand their outcomes to inform what we tell women in the clinic.”

Researchers at the University of Liverpool then worked out that live birth rates were quite similar to the general population, and that there were not particularly any more spontaneous abortions and terminations – although the study did show that women had more infections and that their lung function dropped after giving birth, perhaps due to the propensity of catching viruses from their newborn child.

Jamie added: “All of that information was then used in part two of the study, which Cardiff Metropolitan University led.

“They did a worldwide survey of people with CF to find out what they wanted to know about parenting and planning parenthood.

“They collated all of those responses, and also conducted interviews with healthcare professionals and people with CF to identify what they particularly wanted to know about.”

Thanks to these early stages of research, a shared decision making tool developed in the US is being piloted and adapted to be put into use based on information gathered from thousands of women.