PCD Patient Conference 2024
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 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.
Replay of the presentations can be found on our dedicated Youtube playlist (click here).
The discussions and Q&A were not recorded. All presentations were in English, however, the slides are downloadable in mutiple translated languages:
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Session 1 - PCD the basics
Cilia in PCD – Amelia Shoemark
Symptoms and manifestations of PCD – Myrona Goutaki
Session 2 - Trajectories of PCD from the clinician and patient perspective
Spectrum of PCD disease severity – Claire Hogg
Session 3 - Research: Update on new therapies for PCD
Latest progress on clinical trials of mRNA therapies for PCD - Michael Loebinger
Session 4 - Management strategies for PCD
Latest advice on airway clearance techniques - Paolo Buonpensiero & Michael Davis
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Session 1 - Les basiques de la DCP
Les cils dans la DCP– Amelia Shoemark
Symptômes et manifestations de la DCP– Myrona Goutaki
Session 2 - Trajectoires de la DCP du point de vue du clinicien et du patient
Spectre de gravité de la maladie DCP– Claire Hogg
Session 3 - Recherche : mise à jour sur les nouvelles thérapies pour la DCP
Derniers progrès dans les essais cliniques de thérapies à ARNm pour la DCP - Michael Loebinger
Session 4 - Stratégies de gestion de la PCD
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Teil 1 - PCD –Einführung
Die Zilien bei PCD – Amelia Shoemark
KlinischesBild von PCD – Myrona Goutaki
Teil 2 - Verlauf von PCD aus Sicht von Experten und Patientinnen
Spektrum des Schweregrads der PCD-Erkrankung – Claire Hogg
Teil 3 - Forschung: Update zu neuen Therapien für PCD
Neueste Fortschritte bei der klinischen Erprobung von mRNA-Therapien für PCD - Michael Loebinger
Teil 4 - Behandlungsstrategienfür PCD
Die neuesten Empfehlungen zu Techniken zur Atemwegsreinigung - Paolo Buonpensiero & Michael Davis
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Sesión 1 - PCD the basics
Los cilios en DCP– Amelia Shoemark
Manifestaciones y síntomas de la DCP – Myrona Goutaki
Sesión 2 - Trajectories of PCD from the clinician and patient perspective
Espectro de severidad en la DCP– Claire Hogg
Sesión 3 - Research: Update on new therapies for PCD
Últimos avances en ensayos clínicos de terapias de ARNm para la PCD - Michael Loebinger
Sesión 4 - Management strategies for PCD
PCD Patient Conference 2023
We aimed 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 also provided an opportunity to be updated on ongoing research, meet other people with PCD and contact local patient organisations.
Replay of the presentations can be found on our dedicated Youtube playlist (click here).
All presentations were held in English. We thank again G. Restad for her presentation about living with PCD. For privacy, the video replay won’t be available.
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1 - What is PCD - Basics - S. Crowley
2 - Therapies/management including new treatments:
3 - Research updates:
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1 - Quest ce que la DCP - les bases - S. Crowley
2 - Les thérapies, incluant les nouveaux traitements :
2b - Adultes - F. Ringshausen (bientôt disponible)
3 - Mise à jour de la Recherche :
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1 - Was ist PCD? - Grundlagen - S. Crowley
2 - Therapien & Behandlung (inkl. neuer Behandlungsansätze):
2b - Erwachsene - F. Ringshausen (Bald erhältlich)
3 - Update zur Forschung :
3c - Forschungsschwerpunkte und Kohortenstudien - M. Goutaki
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1 - ¿Qué es DCP? - basicos - S. Crowley
2 - Terapias/manejo incl. nuevos tratamientos :
2b - Adultos - F. Ringshausen (disponible pronto)
3 - Actualización en investigación :
3c - Prioridades en investigación/ estudio de cohortes - M. Goutaki
PCD Patient Conference 2022
The BEAT-PCD patient conference took place online and was organised jointly by patients with PCD and their families, researchers and clinicians. We aimed to provide up to date information on diagnosis, treatments and care in PCD as well as learning from others experiences of PCD. This conference provided an opportunity to meet other people with PCD and contact local patient organisations.
The videos replay is available on the dedicated YouTube playlist (click here)
Presentation materials have been translated into German, French, Greek, Spanish, Turkish and Norwegian and can be download from the links below as PDFs. Depending on the availability of volunteers, not all presentations could be added for all languages, however we plan to complete all translations during or after the conference. If you would like to volunteer to translate them in other languages please contact us at BEATPCD@ersnet.org
PCD Patient Conference 2021
BEAT-PCD Patient Engagement: WP3 call with PCD support groups and ELF
On Friday 29/10/2021, the first online meeting of BEAT-PCD with the European Lung Foundation and representatives from PCD support groups from different countries, took place.
During the meeting, Dr Jobst Röhmel had the opportunity to present the aims and progress of the WP3 “Patient Engagement Activities” Work Package while other members of the ERS BEAT-PCD network presented several ongoing research activities involving patients across Europe. More specifically, Dr Laura Behan talked about the development of the PCD patient education survey, Dr Eva Pedersen presented an update on the COVID-PCD study while Dr Myrona Goutaki presented an ongoing study investigating priorities for PCD research from the experts and the patients’ perspective.
