RecruitingOBSERVATIONAL

A Qualitative Study Investigating the Lived Experiences and Impact of Reproductive Issues in Adults With Primary Ciliary Dyskinesia

This study is inviting adults in the UK who have a condition called Primary Ciliary Dyskinesia, or PCD as it's often known. We are interested in understanding their personal experiences and feelings related to having children, pregnancy, and being parents. This is a chance for people with PCD to share their stories in their own words. There are no medicines or treatments involved; instead, the study simply asks people to take part in an interview about their life experiences. Your thoughts and experiences are important and can help doctors and researchers understand more about PCD and how it affects people's lives.

At a glance

Status

Recruiting

Sponsor

University Hospital Southampton NHS Foundation Trust

Enrolment target

Start

02 Sep 2025

Estimated completion

31 Jul 2026

Primary Ciliary Dyskinesia (PCD)

What is this study about?

This study is all about understanding the personal experiences of adults living with a health condition called Primary Ciliary Dyskinesia, often shortened to PCD. We're especially interested in hearing about how PCD might affect their thoughts and feelings about having children, going through pregnancy, and the journey of being a parent.

Sometimes, medical research focuses a lot on the physical side of a condition. But this study wants to look at the 'lived experience' – what it's really like day-to-day for people with PCD when it comes to family planning and parenting. Your unique story can provide valuable insights that aren't always captured in medical notes or tests.

By carefully listening to and understanding these stories, researchers hope to gain a clearer picture of the challenges and triumphs people with PCD face. This knowledge can then be used to improve support and information available to others with PCD in the future, helping them make informed choices about their reproductive health and family life.

Key takeaways

It's a study for adults in the UK with PCD.
It's about your experiences with fertility, pregnancy, and parenthood.
Participation involves an interview, not medicines or tests.
Your story can help other people with PCD.
You can stop participating at any time.

Who may be eligible?

This study is looking for volunteers who meet a few simple requirements.

First, you need to be an adult, aged 18 or older, and currently living in the United Kingdom. It doesn't matter how old you are as long as you're over 18.

You should also have a diagnosis of Primary Ciliary Dyskinesia (PCD). This means a doctor has either 'likely' said you have PCD or has 'confirmed' you have it. Finally, you need to be willing and able to sign a consent form, which means you understand what the study involves and agree to take part.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 18 years old or older?
Do you live in the United Kingdom?
Do you have a 'likely' or 'confirmed' diagnosis of PCD?
Are you willing to discuss your experiences in an interview?
Are you able to sign a consent form?

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, you won't need to take any new medicines or have any medical tests. Your involvement will simply be an interview. This interview will be focused on your experiences and views regarding fertility, pregnancy, and parenthood as an adult with Primary Ciliary Dyskinesia. The researchers will arrange a time that works for you, and the interview will be a chance for you to share your story in your own words. There will be no follow-up appointments and no long-term commitment beyond the interview itself.

Potential risks and benefits

A potential benefit of taking part is the opportunity to share your experiences, which can help doctors and researchers better understand how PCD affects people's lives and future families. This could lead to improved support and information for others with PCD. There are very few risks involved, as you won't be taking any medication or undergoing invasive procedures; the main focus is on sharing your story. You have the right to withdraw from the study at any time, for any reason, and without explanation. This will not affect your medical care.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

University Hospitals Southampton NHS Trust
Verified postcode
Southampton, United Kingdom· Recruiting

Common questions

What is Primary Ciliary Dyskinesia (PCD)?

PCD is a long-term genetic condition that affects the tiny, hair-like structures (cilia) in parts of the body, especially in the airways of the lungs, ears, and nose.

Will I have to take any new medicines?

No, this study does not involve any medicines, treatments, or medical procedures. It's all about sharing your experiences.

How long will the interview take?

The study description doesn't say exactly, but generally, interviews like this can last from 30 minutes to a couple of hours, depending on how much you wish to share.

Will my information be kept private?

Yes, researchers are required to keep all your personal information confidential. Your name will not be used in any reports or publications.

Do I have to talk about things I don't want to?

No, you are in control of what you share during the interview. You don't have to answer any question you're not comfortable with.

How to find out more

Lydia Newman

lydia.newman@soton.ac.uk 02381206033 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.