The BEAT-PCD Project
BEAT-PCD Clinical Research Collaboration (CRC) is a Europe-led international network of multidisciplinary researchers and clinicians interested in PCD. It was funded in 2020 by the European Respiratory Society, which in 2023 renewed its support for a next period (2023-2026). The network is coordinating research from basic science to clinical care, with the ultimate goal to improve diagnosis and develop treatments that lead to improvements in long-term outcome of patients with Primary Ciliary Dyskinesia (PCD). Read more.
Primary Ciliary Dyskinesia (PCD) is a rare genetic disease
Cilia are common structures throughout the body, so PCD may affect other organs, for example leading to situs inversus, congenital heart defects and infertility.
Mutations in more than 50 different genes have been identified to date, accounting for approximately 70% of PCD.
Cilia that line the mucosal surface are dysfunctional and cannot clear mucus leading to neonatal respiratory distress, persistent daily wet cough, recurrent upper and lower airway infections, bronchiectasis, hearing impairment and persistent rhino-sinusitis.
Featured events
More events can be found in the dedicated Events tab.
News
Additional members added to the Management Committee
We are happy to announce Deepa Patel & Emilie Wattelier (WP3), James Chalmers (WP4), Bruna Rubbo (WP5), Elora Peulier-Maitre (WP8) and Mine Yüksel Kalyoncu (WP9) as members of the Management Comittee. We invited people with strong interest in our purpose and activities, who will be valuable additions. These members include several early and mid-career researchers as well as another patient representative. We would like to thank Katie Horton who decided to step down - Katie has been amazing for the network especially with the work she did with the ECMs since year 1. More information about the Work Packages (WP) on the dedicated page.
Parent information leaflet on Nasal Nitric Oxide measurement in children for the diagnosis of Primary Ciliary Dyskinesia now available
What you need to know about nNO measurement - The 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
PCD patient conference 2024
The BEAT-PCD patient conference takes place online and is organised jointly by patients with PCD and their families, researchers and clinicians. We aim to provide up to date information on the basics of PCD, living with PCD, research updates, treatments for PCD as well as learning from others experiences of PCD. This conference provides an opportunity to meet other people with PCD and contact local patient organisations. Registration and agenda are available on the events page
Research surveys
We have a number of important collaborations which are currently running surveys. All three projects have been selected as important in the advancement of PCD research and services worldwide and we would appreciate your efforts to complete all 3 if possible. The surveys ask for information about current PCD diagnosis and care in your centre for the following purposes (click on the appropriate topic):
Genetic testing strategies to inform the impact of results of the ClinGen gene panel project.
Diagnostic test availability to inform the joint ERS/ATS PCD diagnostic guideline
Follow up to previous BEATPCD project to assess improvement in PCD Services - please download the instructions and documents for survey 3# here.
BEAT-PCD Newsletter
The issue 9 of the BEAT-PCD Newsletter is available here. All the previous issues are available on the News page.
New collaborative platform launched fo PCD Diagnosis
The "Work Package 7 - Improving PCD Diagnosis” has created a slack workspace to provide a collaborative platform about PCD diagnosis. In specific channels, BEAT-PCD members will have the opportunity to ask questions about protocols and methods and to share difficult cases (TEM, HSVM and IF).
Slack allows the sharing of images, videos or PDF files on the platform. The platform will be monitored and moderated at least twice a week by WP7 members providing answers or resources. We are asking members to keep opinion pieces to the minimum and we encourage the exchange of only evidence-based information.
If you would like to join, please contact Dr Mathieu Bottier to receive an invite.
