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
BEAT-PCD network: Lay summary of PCD Annual Research Meeting 2025
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 - German (coming soon) - Spanish
Patients’ research priorities and participation in primary ciliary dyskinesia research
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
Patients and Parents Ressources
Nasal Nitric Oxide measurement in children for the diagnosis of PCD
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". The ISBN number for the book is ISBN 978-3-907243-00-8.
