ERS Congress 2026
The European Respiratory Society (ERS) Congress an annual event that brings together the world's respiratory experts to showcase the latest advances in respiratory medicine and science will take place in Barcelona, Spain
Registration and information on the conference website
The theme for ERS Congress 2026 is:
United for better breathing: partnership between patients, clinicians and researchers
Co-creating care: patients as equal partners (Empowering patients to actively shape their care through shared decision-making and mutual respect)
Listening first: identifying and acting on unmet needs (Prioritising patient voices to uncover real-world challenges and guide meaningful change)
Discovering together: advancing science through collaborative research (uniting patients, clinicians, and researchers to promote a pipeline of research from discovery to improved respiratory health)
PCD Related content
A useful guide to PCD related content can be find in BEAT-PCD Newsletter 13.
Patient perspectives: ERS Congress 2026
Patient perspectives will be at the heart of the ERS Congress 2026. European Lung Foundation (ELF) will provide support to the ERS assemblies and session organisers to:
Understand how to include patient and carer perspectives in their sessions
Ensure the programme addresses the topics which are important to people living with a lung disease
How patient voices can shape the ERS Congress 2026
The European Lung Foundation (ELF) recently held a webinar on how patient voices can shape the ERS Congress 2026. To watch the event recording, visit the ELF website.
BEAT-PCD Meeting at ERS Congress 2026
With the establishment of the Global PCD Conference, there will no longer be a separate BEAT-PCD research meeting held ahead of the European Respiratory Society (ERS) Congress. However, we would like to invite everyone attending the ERS Congress who is interested in BEAT-PCD activities to join our BEAT-PCD Management Committee Meeting on Saturday 5 September at 14:00 CET.
The meeting will provide an opportunity to hear about the latest achievements and ongoing activities across BEAT-PCD, learn more about current research projects, receive an update from our PCD patient partners, and discuss future priorities for the network.
In-person attendance is only possible in person and is open to ERS-registered participants.
Programme
14:00 – Short welcome
Amelia Shoemark and Myrona Goutaki
14:10 – Updates from BEAT-PCD Work Packages
Recent achievements and ongoing activities
15:10 – Short break
15:30 – Research project presentations
Three research presentations, each followed by discussion
Clinical management of upper airway disease in PCD: results from the EPIC-PCD study
Vasiliki GkatzouBiomarkers of infection and inflammation in PCD airways
Laura GardnerThird research presentation – to be confirmed
16:15 – Update from PCD Patient Partners
16:30 – Future outlook and closing
Amelia Shoemark and Myrona Goutaki
Global PCD conference 2026 highlights
Did you miss the Global PCD conference in Montreal?
Co-organized by BEAT-PCD, PCD Foundation and ERN-Lung
Hear the highlights from the conference, from the conference chairs: Heymut Omran (ERN-Lung), Adam Shapiro (PCD Foundation), Amelia Shoemark (BEAT-PCD).
Registration
Registration link will be available shortly
PCD Patient Conference 2026
We're pleased to announce the 2026 PCD Patient Conference, taking place online over two interactive sessions:
Friday, 13 November 2026 | 6:00–8:00 pm (CET)
Topics: Research Updates & Patient experience Panel Discussion
Saturday, 14 November 2026 | 9:00–11:00 am (CET)
Topics: Genetics & Daily life Panel discussion
Join patients, families, researchers, and healthcare professionals for the latest updates in PCD research, practical discussions, and opportunities to hear from experts and members of the PCD community.
More information, including the full programme and registration details, will be available soon.
We look forward to seeing you there!
PCD Expert Talk: Living with PCD study
For the latest results of the Living with PCD study from Andrea Fernandez Rodriguez and Myrona Goutaki.
Registration
Even link will be shared soon
Global PCD Conference 2027
Save the Date
The second Global PCD Conference jointly organized by BEAT-PCD, PCD Foundation and ERN-Lung will be held in Lisbon (Portugal) October 6-10th 2027!
More info to come!
Global PCD conference 2026
Get ready for the inaugural Global PCD Conference, a premier international event focused on the science and clinical care of PCD. The conference will bring together researchers, clinicians, patients and advocacy groups from around the world to advance discovery, collaboration and innovation in PCD.
The conference website is live: https://onecau.se/pcdglobal2026.
Organized by PCD Foundation, BEAT-PCD & ERN-Lung
Registration
Registration is now open for the inaugural Global PCD Conference: Register here
Accommodations
The Global PCD Conference has reserved a block of rooms at Le Centre Sheraton Montreal Hotel. The hotel is a fully renovated, family-friendly hotel in Montreal, QC, that welcomes you with thoughtful amenities and a bustling location near the Bell Centre. The hotel is conveniently located approximately 20 minutes from the Montreal–Pierre Elliott Trudeau International Airport.
To book a room online, please follow the link to our reservation page. Reservations must be made by July 31th, 2026.
Le Centre Sheraton Montreal Hotel
1201 René-Lévesque Blvd W, Montreal, Quebec H3B 2L7, Canada
If you have any questions related to accommodations or any issues making your reservation at Le Centre Sheraton Montreal Hotel, please contact Alexa Lingris at alingris@pcdfoundation.org.
Mastering the new diagnostic pathway: the ERS/ATS clinical practice guideline for PCD
Overview
This one-hour webinar will provide a practical introduction to the newly published joint ERS/ATS evidence-based guideline for the diagnosis of primary ciliary dyskinesia (PCD) (Eur Respir J 2025;66:2500745). As most individuals with PCD remain undiagnosed despite the clear benefits of early diagnosis for both children and adults, this educational session aims to support clinicians in implementing the new guideline in routine practice.
Participants will gain an understanding of the updated diagnostic algorithm, which places genetic testing at the centre of the diagnostic pathway while integrating transmission electron microscopy, nasal nitric oxide measurement, high-speed video-microscopy, and immunofluorescence as complementary investigations. Through expert presentations, interactive clinical cases, and a panel discussion, attendees will learn how to recognise patients who should be referred for diagnostic testing, interpret the results and limitations of the core diagnostic investigations, and apply the guideline to complex clinical scenarios to guide decision-making.
The webinar, chaired by Adam Shapiro, will feature presentations by Amelia Shoemark, Amjad Horani, Thomas Ferkol, and Panayiotis Kouis, followed by a live question-and-answer session.
Registration and information on ERS Respiratory channel
9th World Bronchiectasis Conference
Registration and information on the WBC 2026 website
Message from the organizers:
A decade on from the inaugural World Bronchiectasis Conference in Hannover (2016), our community returns to the city where this global movement began. Over these ten years, bronchiectasis has moved from the margins to the mainstream: international registries have transformed understanding of disease burden and phenotypes; updated guidelines and consensus statements have clarified standards of care; new clinical trials have tested anti‑inflammatory and anti‑infective strategies; airway clearance science and physiotherapy have evolved; and digital health, imaging and microbiome research are reshaping how we monitor, personalise and prevent exacerbations. The patient voice is now firmly embedded in research priorities and service design.
WBC 2026 will gather clinicians, scientists, allied health professionals, patient leaders and industry to translate this progress into better outcomes. Expect cutting‑edge sessions on treatable traits and endotypes, infection and NTM management, precision diagnostics, paediatrics and transition, physiotherapy and rehabilitation, real‑world data and AI‑enabled tools, as well as late‑breaking trials and implementation science. Hannover provides not only a symbolic homecoming but also a watershed moment to set the agenda for the next decade-accelerating therapeutic development, harmonising outcome measures and ensuring equitable access to high‑quality care worldwide.
We invite you to partner with us in Hannover, 24–27 June 2026, to advance the science, elevate clinical practice and improve the lives of people living with bronchiectasis.
Francesco Blasi, James Chalmers, Jessica Rademacher, Felix Ringshausen
WBC 2026 Organising Committee
Hannover, Germany
ERS & ERN-LUNG Virtual school on rare lung diseases
This European Respiratory Society (ERS)/European Reference Network (ERN-LUNG) collaborative course will present the latest understanding and advice on the management of rare lung diseases. Due to the small number of people affected with rare lung diseases, diagnosis can be difficult and treatment options are limited.
This online course will provide an overview on how to diagnose and treat rare lung diseases, including interstitial lung diseases, pulmonary hypertension, cystic fibrosis, primary ciliary dyskinesia, non-cystic fibrosis, bronchiectasis, rare obstructive lung diseases, and rare thoracic cancers.
Participants will benefit from round table discussions, case-based sessions, and the opportunity to present their pre-recorded cases and discuss them with leading experts.
More info and registration: https://channel.ersnet.org/media-114630-virtual-school-on-rare-lung-diseases-2026
Patient partnerships in PCD research
Lucy Dixon, volunteer and past chair of PCD support UK and member of the BEAT-PCD management committee, and Myrona Goutaki, researcher and co-chair of BEAT-PCD take the opportunity to discuss about partnerships between researchers and people living with PCD, as part of the PCD awareness month 2025.
Register here
Patient involvement is nowadays a focal point in health research. Although much progress has been made to set up a good framework and encourage active involvement and engagement of people with lived experiences in research, we still need to take further steps to achieve meaningful partnerships. In this webinar, the two speakers, who have collaborated on several projects, including the participatory Living with PCD study and an international survey on patient priorities for PCD research, discuss the value of patient engagement and involvement to the researchers and to the patient partners, share their experiences, and give advice on how to improve collaborations between patients and researchers and on selecting and maintaining patient partners in PCD research.
Target audience - People living with PCD and their family members who are interested to be actively involved in research and researchers who are interested to develop PCD projects with patient involvement and engagement
Live Translation
Please find a guide here on how to turn on live AI-translated subtitles in Zoom
PCD Annual Research Meeting 2025
The PCD Annual Research Meeting 2025 convenes researchers, clinicians, and healthcare professionals dedicated to Primary Ciliary Dyskinesia (PCD). Organized by BEAT-PCD and ERN-Lung, this meeting provides a valuable forum for sharing the latest advancements in PCD research, encompassing both fundamental science and clinical practice.
Registration
Registration for the PCD Annual Research Meeting 2025 is now open via our partner, Lena Events (click here to register)
The meeting will be followed by a social dinner. Reservations can be made on the registration page. Further details will be provided shortly before the event.
How to reach the venue
The meeting will take place at: Amsterdam UMC – VUmc (Vrije Universiteit Medical Center) De Boelelaan 1117, 1081 HV Amsterdam – Amstel-Zaal room
The venue is easily accessible by public transport:
Tram: line 24 → stop De Boelelaan / VU
Bus: lines 62, 242, 341, 346, 348, 358 → stop De Boelelaan / VU
Metro: lines M50, M51, M52 → stop Amsterdam Zuid
For any help regarding the route to take to get to the Amsterdam UMC, we suggest you use the official website for public transport in the Netherlands: https://9292.nl/en/
International ERN-LUNG PCD Meeting 2025 - online streaming available
Dear Colleagues, dear Friends
It is with great pleasure that we welcome you to the II. International ERN-LUNG PCD Meeting in Naples. We are delighted to see so many of you have registered for this important occasion, reflecting the growing engagement and dedication within our community. Your presence underscores the collective commitment to advancing knowledge and collaboration in the field of primary ciliary dyskinesia (PCD).
This meeting is not just an opportunity to share the latest research and clinical insights but also a moment to strengthen our professional bonds and foster new collaborations. The diversity of expertise and the wealth of experience represented by our participants make this gathering particularly valuable, and we are excited for the discussions and exchanges that lie ahead.
We hope that you will find the program inspiring, the discussions fruitful, and the time spent in Naples both academically enriching and personally enjoyable.
For those, who cannot make it in person: The meeting will also be broadcast live via online streaming, allowing participants to join remotely from anywhere.
Below is the calendar with the access link for each day:
06/04/25 - https://www.itlavmeeting.it/Home/Iscrizione/82284310765
07/04/25 - https://www.itlavmeeting.it/Home/Iscrizione/86120925343
08/04/25 - https://www.itlavmeeting.it/Home/Iscrizione/88180746595
Simply enter your first name, last name, and email address to join the live session.
Links are also available in the info-section of the meeting web page https://pcdnaples2025.centercongressi.com/home.php
Looking forward to see you soon,
Heymut in behalf of the Organizing Committee
PCD Annual Research Meeting 2024
The meeting will be live-streamed on the Lena Event page for pre-registered participants.
Industry supporters
Endorsements
7th World Bronchiectasis Conference
BEAT-PCD will be running a half day session on Primary Ciliary Dyskinesia at the 7th World Bronchiectasis Conference 2024. Along with the organizing committee, we invite you to join and contribute to the World Bronchiectasis Community meeting planned in Dundee from 4 to 6 July 2024. Register and Submit an abstract here
Welcome letter from James D. Chalmers, Chairman of the 7th WBC
Dear Colleagues & Friends,
It’s a great pleasure –as Chairperson of the 7thWorld Bronchiectasis Conference 2024 -to invite you to join and contribute to the World Bronchiectasis Community meeting planned in Dundee from 4 to 6 July 2024.
The last years have been amazing for our international community.
Bronchiectasis has emerged from its history as a neglected condition to now being a dynamic field experiencing rapid progress. New translational science ishelping to revealthe physiopathologicalmechanismsbehind the disease and identify new targets. EMBARC and National Registries have contributed to describing the epidemiology, providing us with precious insights into the natural history of the disease, its comorbidities,and its current management approachesacross different countries. Together we have set key priorities forresearchto improve the quality of life of patients.
The COVID-19 pandemic and the past several years of scientific progress have clearly placed respiratory tract infections at the centre of public health, clinical practice, and scientific debate, helping us to provide new instruments to prevent andtreat exacerbations and comorbidities.
Our Multidisciplinaryteams, including specialist nurses, physiotherapists and other healthcare professionals are improvingthe patient journey, in some countries where resources are being devoted to bronchiectasis, while in many countries we still have a long way to go to succeed in being included in the delivery of healthcare for bronchiectasis patients.
After years of repurposing therapies from COPD and cystic fibrosis, new therapies are in development specifically for bronchiectasis and therapeutic breakthroughs feel closer than ever. The omics revolution is now helping us in starting to breakthrough the heterogeneity of the disease as well as to understand the causesbehind the symptoms.
Bronchiectasis stands on the threshold of a new age of exciting science and therapeutic development.
With this exciting context, I invite you to participate and contribute to the next World Bronchiectasis Conference and work together with us to create a better future for our patients with bronchiectasis.
Yours Sincerely,
James D. Chalmers
Ciliopathy Alliance 2nd Webinar - Learn about Sight Loss Research in Ciliopathies
Join the Ciliopathy Alliance for their 2nd webinar on Monday, 3rd June 2024 from 1 p.m. to 2.30 p.m. to learn about:
The latest research into RP (Dr. Roly Megaw, University of Edinburgh)
The patient's perspective re sight loss research for Usher patients (Steve White, Cure Usher)
Register here and you will receive a confirmation email containing links on how to join the meeting.
International ERN LUNG – PCD Meeting
The International ERN-LUNG PCD Meeting will take place in Nicosia, Cyprus between April 10th – 12th 2024.
The event is jointly organized by the University of Cyprus, the University of Münster, the Copenhagen University Hospital - Rigshospitalet and the PCD Clinical Trial Network. It will bring together scientists from across the world to share their advances in PCD diagnosis, clinical research, and care. Participation in the meeting and the workshops will be free of charge.
You can register here.
You can find the near final agenda here.
You can apply for a travel grant here.
You can click here to submit your abstract.
For any additional information, please contact kouis.panayiotis@ucy.ac.cy
nNO measurement in children for the diagnosis of PCD
ERS Webinar: Nasal nitric oxide measurement in children for the diagnosis of primary ciliary dyskinesia: a European Respiratory Society technical standard
Find out more and register
11 March, 2024 - Online - 17:00–18:00 CET
Chair: Dr Myrofora Goutaki (Bern, Switzerland)
Speakers: Dr Nicole Beydon (Paris, France), Prof. Dr Jane Lucas (Southampton, United Kingdom)
Fees: Free for ERS members / €10 for non-members
Find out more about becoming a member
Educational aims
In this session, we will present the ERS Technical Standard of the measurement of nNO in children. The session will provide all the necessary information for people wishing to develop the measurement of nNO in children suspected of PCD. It will also give tools on how to express and interpret results.
Topics
Describe the different techniques and methods used to measure nNO in children, their advantages and disadvantages.
Explain the effect of the environment on nNO measurement and how to deal with it.
Propose a standard report and explain how to interpret the results.
Target audience:
Clinicians
Laboratory technicians
Nurses performing the test
Respiratory scientists
Format
This webinar will include 45-minute of lectures, followed by a final round table discussion for 15 minutes.
Learning outcomes
After following this webinar, participants should be able to:
Set-up the measurement of nNO in their centre
Perform nNO measurement in children from the age of one year
Report and interpret the results
ERS Virtual school on Patient and public involvement in research
Register here
In this course, the attendees will learn what patient and public involvement in research is and the evidence which shows that it is effective. The course will help to understand how patient and public involvement differs from research participation, explore different ways in which patients can provide input, its best practices, and challenges.
Topics
The course will focus on the development of following questions:
What is patient involvement and what value can it bring?
How can patients be involved in research projects?
Exploring PPI in practice: case studies from EMBARC and BEAT-PCD
Understanding best practices in PPI, in order to ensure a good experience for those involved
Where to start? Practical tips for starting to involve patients and the public in research
Format
Lectures
Q&A discussions
Please note that all timings are in Central European Time (CET).
Recording of the session will be made available to registered participants after the event.
Target audience
Early career members
Clinicians
Post-graduated students
Other health-related professionals
Accreditation
An application will be submitted to the European Board for Accreditation in Pneumology (EBAP) for CME accreditation of this event. The number of credits that you will receive will correspond to the time you spend viewing the sessions live.
PCD Patient Conference 2023
After a successful first patient conference in 2022, the BEAT-PCD patient conference will take place again this year online on Tuesday November 21st at 14:00 CET, organised jointly by patients with PCD and their families, researchers and clinicians.
You can register for free here
We aim to provide up to date information on basics concepts about PCD, treatments and care in PCD as well as learning from others experiences of PCD. This conference will also provide an opportunity to be updated on ongoing research, meet other people with PCD and contact local patient organisations.
All presentations will be held in English, however we aim to provide the slides at the beginning of the conference in English, German, French and Spanish, on our website. In addition, we will use an AI closed caption software that translates English in many languages, to support joiners from several countries. We will share instructions at the day of the conference. Please keep in mind that the software is imperfect and cannot always pick up words and phrases correctly. We cannot check and correct some of the translations, but we still hope it will allow more people to follow the talks and discussion.
The agenda can be downloaded here (English)
Agenda également disponible en Français ici
BEAT-PCD/ERN-Lung Meeting & BEAT-PCD Training school
Live Stream here: BEAT-PCD/ERN-LUNG Meeting & Training school 2023 (lena.events)
Audience: Researchers, Clinicians, Scientists, AHPs and early career members with an interest in diagnosis and management of the inherited motile ciliopathy Primary ciliary dyskinesia.
Meeting Objectives:
Update members of the PCD community on the latest research and European initiatives
Provide opportunity to get involved in shared projects and goals and build on important international collaborations, crucial in rare disease research
Involve and encourage early career members in PCD research
Learn from people with PCD about research priorities: patients are central to our objectives
Download the program here
Primary ciliary dyskinesia patient conference 2022
The BEAT-PCD patient conference will take 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 diagnosis, treatments and care in PCD as well as learning from others experiences of PCD. This conference will provide an opportunity to meet other people with PCD and contact local patient organisations. You can register here.
Conference Agenda
Day 1 - Friday, December 2nd, 13:00 - 17:30 CET:
13:00-13:10: Welcome on behalf of the organising committee & housekeeping information - Myrona Goutaki
Session 1: Introduction to PCD - chairs Amelia Shoemark, Petra Tempels
13:10-13:30: PCD, the basics, why cilia are not moving correctly - Jobst Röhmel
13:30-13:50: Diagnosis of PCD (what is needed at minimum) – Amelia Shoemark
13:50-14:10: Session discussion
Session 2: Living with PCD at all ages – chairs Myrona Goutaki, Tamar Makhatadze
14:10-14:30: Two patient videos followed by discussion
14:30-15:00: How can people with PCD manage physiotherapy in daily life- Paolo Buonpensiero/ Rik Kremer
15:00-15:20: Discussion
15:20-15:30 BREAK
15:30-15:50: Two patient videos followed by discussion
15:50-16:10: Mental Health and PCD - Anne Griffiths/ Tamara Vance
16:10-16:30: Discussion
16:30-16:50: Patient testimonial- Hansruedi Silberschmidt
16:50-17:05: Transition of care in PCD- Amanda Harris
17:05-17:15: Discussion
17:15-17:30: Two patient videos followed by discussion
End of Day 1
Day 2 - Saturday, December 3rd, 11:00 - 15:30 CET:
Session 3 Standards of care in PCD- chairs Suzanne Crowley, Fiona Copeland
11:00-11:45: Paediatric care for PCD- Suzanne Crowley
Adult care for PCD - Anand Shah
ENT care for children and adults with PCD - Mihaela Alexandru
11:45-12:05: Discussion
12:05-12:10: Patient videos on PCD treatments
12:10-12:25: PCD treatments outside the norm - Jane Lucas
12:25- 12:45: Discussion
12:45-13:15 BREAK
13:15-13:35: The future of PCD treatments: Inclusion and exclusion criteria for research- Phil Robinson
13:35-14:05: How PCD care is set up in different countries –Fiona Copeland (UK)/Sandra Rovira (Spain)/Pinelopi Anagnostopoulou (Cyprus)
14:05-14:15: Discussion
Session 4: Bringing patients together through PCD Support Groups– chairs Laura Behan, Iliana Georgiou
14:15-14:30 Rare-E-Connect - Vicky Antoniadou
14:30-14:40 Introductions of support groups
14:40- 15:25 Break-out rooms
15:25-15:30 Closing words - Amelia Shoemark
End of the conference
3rd ERS BEAT-PCD annual meeting (in person)
3rd BEAT-PCD meeting in collaboration with ERN LUNG
Hosted by Antonio Moreno-Galdó at Vall d'Hebron Institut de Recerca (VHIR), Vall d'Hebron Hospital Universitari, Vall d'Hebron Barcelona Hospital Campus, 08035 Barcelona, Spain.
Meeting Agenda
12:00 - 13:00 Lunch time
13:00 - 13:30 Welcome to BEAT-PCD / ERN LUNG meeting and Patient Perspectives
(Chairs: Heymut Omran & Claudia Kuehni)
Presenters: Trini Lopez Fernandez & Lucy Dixon
13:30 - 14:00 Plenary Lecture “ Milestones of the PCD research community”
(Chairs: Mieke Boon & Katie Horton)
Presenter: Eric Haarman
14:00 - 15:00 ERN-LUNG PCD Registry Updates - General Overview
(Chairs: June K. Marthin & Petra Pennekamp)
nNO study (Johanna Raidt/Heymut Omran)
Genotype/Phenotype study (Johanna Raidt/Heymut Omran)
Siblings study (Panayiotis Kouis)
Exacerbation study (Pinelopi Anagnostopoulou)
Future studies - Discussion
15:00 - 15:30 Coffee break
15:30 - 15:50 Update on Clinical Trials Network (CTN), ongoing and planned clinical trials (Chairs: Jobst Röhmel & Eric Haarman)
Presenters: Kim Nielsen & June K Marthin
15:50 - 16:50 BEAT-PCD led projects updates
(Chairs: Myrona Goutaki & Adam Shapiro)
Launch of CiliaVar database (Suzanne Crowley & Hannah Mitchison)
Upper airways disease in PCD, EPIC-PCD study (Yin Ting Lam)
COVID-PCD study (Leonie Schreck)
COS consensus (Eric Haarman)
16:50 - 17:00 Closing remarks (Amelia Shoemark & Antonio Moreno)
17:00 - 19:00 Wine reception
A PDF version of the schedule is available here.
Register your interest here: PCD annual meeting (in person event) Tickets, Sat 3 Sep 2022 at 12:00 | Eventbrite
PCD Training School
Hosted by Antonio Moreno-Galdó at Vall d'Hebron Institut de Recerca (VHIR), Vall d'Hebron Hospital Universitari, Vall d'Hebron Barcelona Hospital Campus, 08035 Barcelona, Spain.
The training school targets early career members of BEAT-PCD and includes sessions on:
09:00 - 09:10 Welcome (Antonio Moreno, Amelia Shoemark & Heymut Omran)
09:10 - 10:10 PCD management
(Chairs: Felix Ringhausen + Sandra Rovira)
Management of bronchiectasis in adults with PCD (Eva Polverino)
LCI in PCD (Jobst Röhmel)
Submitted difficult management cases - Discussion
10:10 - 10:30 Coffee break
10:30 - 11:30 PCD diagnostic testing
(Chairs: Jane Lucas + Nisreen Rumman)
Immunofluorescence for PCD training (Noelia Baz Redon & Heymut Omran)
Genetic testing for PCD training (Núria Camats & Hannah Mitchison)
Submitted difficult diagnosis cases - Discussion
11:30 - 12:00 Research update
(Chair: Phil Robinson)
Whats new in PCD? Research update since we last met (Claire Hogg)
A PDF version of the schedule is available here.
You can sign up here: PCD annual training school (in person event) Tickets, Sat 3 Sep 2022 at 09:00 | Eventbrite
BEAT-PCD ERS CRC WP3 call with PCD support groups
We would like to invite all patients representatives and people with PCD to the next online meeting of WP3 of the BEAT-PCD clinical research collaboration on Friday March 18th at 17:00-18:00 CET.
At the last meeting, we discussed unmet needs and areas that could benefit from our support. We jointly identified that a European patient congress could be helpful to improve communication among support groups with representatives of patient engagement groups and patients. We would like this to be an (online or hybrid) congress co-organised by BEAT-PCD and PCD support groups.
Therefore, we would like at this next meeting to discuss more in detail how to proceed and how you can be involved in the planning of European PCD patient congress.
We would be glad if you joined the meeting using the following link:
https://unibe-ch.zoom.us/j/63917233917?pwd=cldJRS8yMTd0c2FtdWJLbmYvUnZBQT09
Meeting ID: 639 1723 3917
Passcode: 337714
For more information contact:
Myrona Goutaki myrofora.goutaki@ispm.unibe.ch and Jobst Rohmel jobst.roehmel@charite.de
BEAT-PCD ERS CRC WP3 call with PCD support groups and ELF
We would like to invite you to the next online meeting of WP3 of the BEAT-PCD clinical research collaboration on Friday October 29th at 17:00-18:00 CET.
At this meeting, we would like to update you and get your feedback about the different ongoing and planned patient engagement activities of the BEAT-PCD network.
17: 00 Welcome and introduction about the patient engagement activities of BEAT-PCD- Jobst Roehmel
17:15 Patient education needs survey- Laura Behan
17:30 Research priorities for PCD- Myrona Goutaki
17:45 COVID-PCD study- Eva Pedersen
The call is organized by the WP3 chairs and ELF and every interested person with PCD or parents of children with PCD are invited to participate. All presentations will be held in English.
To join the call use the following link:
https://unibe-ch.zoom.us/j/65011551017?pwd=bitnWEZxZkhiQnVhbUpEUjVpNlZSZz09
Meeting ID: 650 1155 1017
Passcode: 671400
For more information contact: Myrona Goutaki myrofora.goutaki@ispm.unibe.ch and Jobst Rohmel jobst.roehmel@charite.de
BEAT PCD annual meeting
BEAT-PCD annual meeting 2021 - Agenda:
13:00 - Welcome, meeting rules and introduction
Amelia Shoemark and Myrona Goutaki
13:15 - Work package summaries (10 min each including questions)
Work Package Leads
14:15 - 30 minute break/interactive sessions
14:45 - PCD genetics and molecular therapies (3x10 min talks including questions)
Chairs: Heymut Omran and Mathieu Bottier
Development and first results of the BEAT-PCD international Primary Ciliary Dyskinesia gene variant database: CiliaVar - Amelia Shoemark
High-content screening for rare respiratory diseases: read through therapy in primary ciliary dyskinesia - Chris O'Callaghan
A messenger RNA (mRNA)-based therapeutic designed o treat PCD - Caroline Woo
15:15 - Genome-wide analysis of PCD gene variant frequencies: estimated prevalence and
ethnic heterogeneity (15 min, 5 min questions) - Will Hannah
15:35 - Cohort studies on PCD (2 x 10 min talks including questions)
Chairs: Claudia Kuehni and Renate Kos
The EPIC-PCD study: time to focus on the upper airways - Myrona Goutaki
COVID-PCD: results and future plans - Eva Pedersen
15:55 - Highlights from the ERS meeting (5 x 10 min talks including questions)
Chairs: Jane Lucas and Rob Hirst
The short term influence of chest physiotherapy on lung function parameters in pediatric bronchiectasis - Mieke Boon
The international primary ciliary dyskinesia (PCD) registry reports genotype/phenotype correlations - Johanna Raidt
Service delivery models for primary ciliary dyskinesia, an international comparison - Bruna Rubbo
Diagnosis of Primary Ciliary Dyskinesia: Discrepancy according to different algorithms - Mirjam Nussbaumer
The prevalence of primary ciliary dyskinesia (PCD) in adult patients with bronchiectasis in Dnipro (Ukraine) - Kseniia Suska
16.45 - Closing Remarks
Amelia Shoemark and Myrona Goutaki
17:00 - Break out meetings for specific projects (until 17:30-17:45)
Register here.
BEAT PCD training school
BEAT PCD training school - Agenda
13:00 - Welcome
Amelia Shoemark, Myrona Goutaki, Claire Hogg
1st session: Chairs: Suzanne Crowley and Ana Reula
13:15 - Recognition and diagnosis of PCD in neonates and infants
Claire Hogg, Royal Brompton Hospital
Reena Bhatt, Royal Brompton Hospital
14:00 - nNO measurement in preschool age
Jane Lucas, University of Southampton
Nicole Beydon, Hospital Armand-Trousseau
14:45 - Break
2nd session:
Chairs: Eleonora Dehlink and Nagehan Emiralioglu
15:00 - Recognising and treating PCD in adults with bronchiectasis
Amelia Shoemark, University of Dundee
James Chalmers, University of Dundee
15:45 - Diagnostic dilemmas – route to resolution case reviews
Marie Legendre, Sorbonne University & Inserm
Hannah Mitchison, UCL Institute of Child Health
16:30 - Closing Remarks
Register here.
BEAT-PCD & ERN lung: Difficult diagnosis case meeting & specialist seminar on AI in PCD diagnosis
This difficult diagnosis meeting is a forum to discuss cases of possible PCD or motile ciliopathies with fellow specialists
Presentation and discussion of difficult to diagnose PCD cases will be followed by a special seminar on use of Artificial Intelligence in PCD diagnosis
Audience: Medical professionals specialising in diagnosis of PCD.
Please register your interest. (https://www.eventbrite.co.uk/e/beat-pcd-difficult-diagnostic-cases-tickets-121019363173)
Agenda:
13:00 (CET): Welcome to meeting and introduction to expert panel
13:10: Difficult diagnosis . 6 case presentations (submitted prior to the meeting - please register your interest to submit your case)
14:30- Special interest seminar with guest speakers on the use of AI in PCD diagnosis
15.00 - Meeting close
BEAT-PCD ERS CRC WP3 call with PCD support groups and ELF
The call aims to discuss the project of a survey to identify specific neefs for information and educational material for people with PCD and their families.
The call is organized by the WP3 chairs and ELF and all interested person with PCD or parents of children with PCD are invited to participate, as well as clinicians interested in the project.
To join the call use the following link: https://unibe-ch.zoom.us/j/97119241159?pwd=M2twUUdzWkxYOUh2dTdlMDNHdkRSdz09
For more information contact Jobst Röhmel
BEAT PCD CRC Inaugural Online Meeting
Join us for the ERS CRC Inaugural Online meeting at the 10th September 13:00 CET/ 12.00 UK time.
Please register for free here.
BEAT PCD meeting agenda
13.00 (CET) - Welcome and meeting rules (CHAIRS Amelia Shoemark & Myrona Goutaki)
13.05 - Introduction to the BEAT PCD ERS CRC
13.20 - 5 min summary from each work package lead followed by questions and discussion at the end of all presentations
14.15 - Break/ Group discussions
14.45 - Highlights from the ERS meeting (CHAIR Jane Lucas)
Primary ciliary dyskinesia and non-CF bronchiectasis in the 100,000 Genomes Project - G. Wheway (Southampton, UK)
Severity of Bronchiectasis and Lung Functions Related with the Genotype of Primary Ciliary Dyskinesia Patients - N. Emiralioğlu (Ankara, Turkey)
Comparison of patient care pathway between primary ciliary dyskinesia and cystic fibrosis - R. Epaud (Creteil, France)
Anxiety and depression in Dutch patients with Primary Ciliary Dyskinesia: Associations with health-related quality of life - M. Verkleij (Amsterdam, Netherlands)
16.00 - Key note speakers (20min each) (CHAIR Claudia Kuehni)
Overview of EMBARC CRC activities– James Chalmers
Overview of ERN-Lung PCD core activities- Heymut Omran
16.40 Patient led research (10 minute talks including questions) (CHAIR Claire Hogg)
Patient involvement in research- Lucy Dixon
COVID-PCD study - Claudia Kuehni, Eva Pedersen
17.00 Meeting close and informal discussion