Patient Resources
Here you can explore easy-to-read summaries of PCD research, find studies that are currently looking for participants, and access helpful educational resources. We aim to make research clearer and more accessible, so you can stay informed, get involved, and connect with the wider PCD community.
Research Summaries
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Laboratory models made from human airway cells have been used to better understand primary ciliary dyskinesia (PCD) and to test potential treatments. This review examined published research on existing models and found that a range of different approaches have been used, including cultures of patient airway cells, organoids, spheroids and stem cell-derived airway cells. These models have been used to test potential treatments, and to study how infections, medications and environmental exposures affect the airways. However, the methods used to create and test these models varied considerably between studies, making it more difficult to compare results. The review highlights the need for agreed standards on how PCD models should be tested and reported. This will improve research quality and help accelerate the development and testing of new treatments for people living with PCD. Published in July 2026.
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This review discusses the requirements of laboratory models specifically used to develop and test new treatments for primary ciliary dyskinesia (PCD). These models, which can be made from patient airway cells or stem cell-based systems, are designed to closely mimic the disease. The review highlights the challenges of designing reliable models for testing potential treatments and bringing through promising treatments from the laboratory to the clinic. The tools used to assess whether these treatments are effective are also discussed, including the correction of the genetic code, and restoration of cilia structure and movement. Finally, the review highlights the importance of developing shared research standards and consistent reporting guidelines to improve the quality and comparability of studies. This will help to accelerate the development of safe and effective treatments for people living with PCD. Published in July 2026.
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Healthcare professionals from 35 countries reported that people with Primary Ciliary Dyskinesia (PCD) often face delays in diagnosis and challenges accessing specialist care because the condition is not well known, services are limited, and funding is insufficient. They agreed that improving awareness of PCD, strengthening collaboration between healthcare centres, and expanding access to expert diagnostic and care services are key steps to improving outcomes for patients worldwide. Published in March 2026. Summary available in English
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Please find here a lay summary for the article “Patients’ research priorities and participation in primary ciliary dyskinesia research” authored by Yin Ting Lam, Laura Behan, Katie Dexter, Lucy Dixon, Claudia E. Kuehni, Leonie Schreck, Jane Lucas & Myrona Goutaki. Available in many versions: English - French - Spanish - German - Turkish - Italian
Conferences
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Lay summary of the 4 days of conference can be found here
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The PCD track at the World Bronchiectasis Conference 2026, held in Hannover (Germany) on 25 June, brought together experts from around the world to share the latest advances in PCD diagnosis, management and research. Find the conference summary here and catch up on the key presentations, discussions and future research directions. A special thank you to Erin Cant (University of Dundee) for attending the conference in person and preparing this summary (available in English).
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In honor of PCD Awareness Month, and with the invaluable support of patient representatives whom we sincerely thank, we are pleased to share a lay summary of the BEAT-PCD projects and its key achievements. This summary provides an overview of the presentation by Myrona Goutaki, detailing the progress of the different projects and updates for each work package within the BEAT-PCD network. We hope this offers a clear insight into the ongoing efforts and advancements in the field of Primary Ciliary Dyskinesia. Available in translated versions: English - French - Spanish
Living with PCD project
Fertility experiences of people with PCD and their family caregivers: Women and men with primary ciliary dyskinesia (PCD) often have problems having children. This can significantly impact their lives, yet little is known about their fertility experiences. Understanding these experiences is important to improve support, address concerns, and ensure people with PCD can make informed decisions about family planning. Published in June 2025
Incidence and predictors of lung exacerbations in PCD: Lung exacerbations, i.e. flare-ups of lung symptoms, are common among people with primary ciliary dyskinesia (PCD) and often due to infections. Frequent exacerbations can damage the lungs over time and reduce quality of life. However, it is unclear how often people with PCD have an exacerbation. We also do not know who is at higher risk of frequent exacerbations. This knowledge could lead to earlier and more targeted treatments when needed, improving the care and health outcomes of people with PCD. Published in January 2025
Questionnaire assessed genotypes and associations with symptoms in PCD: It is important to understand the role of specific genetic mutations (changes in the DNA) in primary ciliary dyskinesia (PCD). If we better understand which mutations lead to which symptoms, people can get access to the appropriate treatment depending on their genetic type of PCD. We studied how the more than 50 different genes that cause PCD relate to self-reported symptoms and characteristics such as age of PCD diagnosis and laterality defects (one or more organs situated in the wrong side of the body). Published in October 2024
Infertility and pregnancy outcomes among adults with primary ciliary dyskinesia: People with primary ciliary dyskinesia (PCD) can have issues conceiving. It is unclear how many with PCD struggle to have children, and how many are able to have children with help. We also do not know if women with PCD tend to have more ectopic pregnancies (pregnancies outside of the uterus) than the general population. We wanted to know the answers to these questions. Published in June 2024
If you are interested in reading more from the Living with PCD study, please visit their website. The content is available in English, German, French, Italian, and Spanish.
Patients and Parents Ressources
European Lung Foundation - Diagnosing primary ciliary dyskinesia: understanding the professional guidelines
Understanding a diagnosis of primary ciliary dyskinesia (PCD) can be complex, but it doesn't have to be. The European Lung Foundation has published a new patient-friendly guide explaining the latest ERS/ATS professional guidelines for diagnosing PCD in clear, accessible language. The resource walks through the diagnostic pathway, explains the different tests used, and helps patients, families, and healthcare professionals better understand how a diagnosis is reached—empowering informed discussions and improving awareness of this rare disease.
European Lung Foundation - Primary Ciliary Dyskinesia information
The European Lung Foundation (ELF) website hosts a dedicated page on PCD, offering comprehensive, patient-friendly information. Visitors can learn from people living with PCD and explore key topics including symptoms, diagnosis, causes, treatment and management options, living with PCD, and prognosis and long-term outlook. The page also features the latest PCD news, alongside useful resources and signposting to additional support and specialist services.
Nasal Nitric Oxide measurement in children for the diagnosis of PCD
What you need to know about nNO measurement
This parent information leaflet provides information on the measurement of nasal nitric oxide (nNO) in children. This test is undertaken in children investigated for primary ciliary dyskinesia (PCD), a rare inherited respiratory disease.
English - Georgian - German - Greek - French - Italian - Swedish - Turkish
More translated versions in many langages to come.
In his autobiography “Coughing forbidden - A Life with a Rare Disease”, Hansruedi Silberschmidt describes his life and medical path to PCD diagnosis and beyond. Despite having typical symptoms since birth, Hansruedi was diagnosed at age 39 after repeated visits to specialists and pulmonary rehabillitation clinics. In his book he describes vividly the difficult path of a person with PCD through life, how he navigated through the labyrinth of modern medicine and how was able to participate successfully in life despite his chronic illness. This autobiography was just published and it is an empowering read for people with PCD and their families.
The book is available in bookstores and online retailers, in German with the original title "Husten verboten- Ein Leben mit einer seltenen Krankheit" (ISBN 978-3-907243-00-8).