Sep
6
9:00 AM09:00
PCD Annual Research Meeting 2024
The meeting will be live-streamed on the Lena Event page for pre-registered participants.
Filtering by: BEAT-PCD
Jul
4
to Jul 6
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
Jun
3
1:00 PM13:00
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.
Apr
10
to Apr 12
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
Mar
11
5:00 PM17:00
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
Jan
25
2:30 PM14:30
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.
Nov
21
2:00 PM14:00
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
Sep
8
9:00 AM09:00
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
Dec
2
to Dec 3
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
Sep
3
to Sep 4
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
Sep
3
3:00 PM15:00
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
Mar
18
10:00 PM22:00
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
Oct
29
to Oct 30
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
Sep
9
to Sep 10
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.
Sep
4
7:00 PM19:00
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.
Nov
5
7:00 PM19:00
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
Oct
2
to Oct 3
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
Sep
10
7:00 PM19:00
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
