Project overview
Background: Primary ciliary dyskinesia (PCD) is an inherited medical condition that stops tiny hair-like structures in the body called cilia moving properly. PCD is more common in minority ethnic groups. PCD can cause lung, heart, sinus and ear disease as well as affecting people's ability to have children. About 3 in 5 women and 4 in 5 men with PCD have problems conceiving a child. This can cause negative effects on relationships, mental wellbeing and financial problems. The causes of fertility problems in people with PCD or how to predict who will be affected is poorly understood. In some men, the condition is linked to sperm abnormalities. PCD may also affect the cilia in the male and female reproductive tracts. The safety of pregnancy for women with PCD is currently not well known. Very limited information has suggested that women with PCD who do get pregnant could be at higher risk of ectopic pregnancy (pregnancy outside the womb) and of pregnancy complications including worsening lung function and premature birth. Research interviews with people with PCD and medical professionals showed that research into fertility is important and should be prioritised. People with this condition report they would like more information about pregnancy and fertility and wish that doctors looking after them are better informed. Aim: To describe fertility and pregnancy outcomes in people with PCD and create resources to improve education and awareness among patients and healthcare professionals. Research plan: I will ask men and women with PCD to take part in interviews and complete a questionnaire to learn about the experiences of people with PCD and why some people may be more likely to experience fertility problems. To find out about the risks of pregnancy for women with PCD, I will perform a national study where all hospitals in the UK will be asked to anonymously report pregnancy and childbirth information for women with PCD. Patients and public involvement: People with PCD have helped develop this research proposal, including making changes to the study questionnaire. As well as taking part in this research, two patient representatives will join our study team to help continue to shape the study and share its results. I will work with people with PCD and medical professionals to co-develop resources that will help patients and the people providing their care to better understand fertility and pregnancy safety in people with this condition. Dissemination: I will find out what impact fertility problems are having on men and women with PCD, both as individuals and across the UK. This study will also find out more information about what causes reduced fertility in PCD which may help predict who will be affected. This study will provide more information about the risks of pregnancy for women with PCD and, if they are at higher risk of ectopic pregnancy, could change women's medical care including offering earlier pregnancy scans. I will find out how and what information people with PCD and their medical teams want to know about fertility and pregnancy in this condition. I will develop a resource for, and with, patients and their medical teams to help them be more informed. We will make these resources freely available and share our findings by speaking at medical and patient conferences. I will publish our results openly online for the public, through social media and in medical journals and websites. This study will help provide information to empower people to make choices around attempting to have children and may lead to future change in how we care for women with PCD during their pregnancies.
