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

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:

1. What is patient involvement and what value can it bring?

2. How can patients be involved in research projects?

3. Exploring PPI in practice: case studies from EMBARC and BEAT-PCD

4. Understanding best practices in PPI, in order to ensure a good experience for those involved

5. 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.

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

Das Programm gibt es hier auf Deutsch

Programa disponible aquí en español.

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

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

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 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.

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

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