Dr Lucy Mackillop – Pregnancy in women with cystic fibrosis

A UK-wide study of maternal and neonatal outcomes

Dr Lucy Mackillop, Oxford University Hospitals NHS Trust: Pregnancy in women with cystic fibrosis: a UK-wide study of maternal and neonatal outcomes

£15,000 over 24 months

Cystic fibrosis is a genetic disorder in which primarily the lungs but also the digestive system and kidneys become clogged with thick, sticky mucus.

Advances in medical care for people with cystic fibrosis (CF) have led to improvements in overall health and life expectancy. Consequently, pregnancy in women with CF is on the increase. However, there are little data available to advise women on how their CF might affect a pregnancy. 

In particular more data on pregnancy outcome in women with the poorest lung function is urgently required. 

The project

The study aims to identify all pregnant women with cystic fibrosis within the UK who register for care at a hospital maternity unit.  Pregnant women with cystic fibrosis will be identified by the UK Obstetric Surveillance System (UKOSS).  All 213 UK hospitals with a consultant-led maternity unit have nominated individuals to whom a monthly ‘tick-box’ report card is sent requesting the notification of new cases. Hospitals will be asked to report all cases of pregnant women registering with their maternity unit who have a diagnosis of cystic fibrosis confirmed by genetic testing performed either prior to or during the pregnancy.

The primary aim of this study is to examine the effect of a woman’s lung function on the outcomes of her pregnancy for women delivering within the United Kingdom within a set time period. The study results will be published in the UKOSS annual report which is distributed to all reporting clinicians, steering committee members, Directors of Public Health in Strategic Health Authorities and Health Boards, Chief Medical Officers, Voluntary Groups in the Perinatal Field, the UK Department of Health, and the Patient Safety Observatory and will be freely available on the UKOSS website.

The long-term goal of this study is to provide relevant, up to date information with which to guide medical professionals in supporting the care of women both planning and during pregnancy, and ultimately to help women with CF make informed choices regarding pregnancy and planning a family.