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 will be available after the event

All presentations will be in English however, the slides are downloadable in mutiple translated languages:

  • 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

    Results of recent clinical trials and research targeting inflammation, infection and airway hydration – James Chalmers

    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

  • 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

    Résultats d'essais cliniques et de recherches récents ciblant l'inflammation, l'infection et l'hydratation des voies respiratoires – James Chalmers

    Derniers progrès dans les essais cliniques de thérapies à ARNm pour la DCP - Michael Loebinger

    Session 4 - Stratégies de gestion de la PCD

    Derniers conseils sur les techniques de dégagement des voies respiratoires- Paolo Buonpensiero & Michael Davis

  • 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

    Ergebnisse aktueller klinischer Studien und Forschung zu Entzündungen, Infektionen und der Feuchtigkeitsversorgung der Atemwege – James Chalmers

    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

  • 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

    Resultados de ensayos clínicos recientes e investigaciones dirigidas a la inflamación, infección e hidratación de las vías respiratorias – James Chalmers

    Últimos avances en ensayos clínicos de terapias de ARNm para la PCD - Michael Loebinger

    Sesión 4 - Management strategies for PCD

    Últimas recomendaciones sobre técnicas de limpieza de las vías respiratorias - Paolo Buonpensiero & Michael Davis

 

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.

 

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

Translated presentations : English: Day 1 Day 2 - German: Day 1 Day 2 - French: Day 1 Day 2 - Greek:  Day 1 Day 2 - Spanish: Day 1 Day 2 - Turkish: Day 1 Day 2 - Norwegian: Day 1 Day 2 - Italian: Day 1 Day 2

Finally, we are grateful to PCD Support UK for providing most of the PCD management videos.

 

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.