BEAT-PCD – Better Experimental Approaches to Treat Primary Ciliary Dyskinesia

CRC Chairs :

  • Dr Amelia Shoemark (University of Dundee, UK)
  • Dr Myrofora Goutaki (University of Bern, Switzerland)

Access to BEAT-PCD website: https://beat-pcd.squarespace.com

About BEAT-PCD

The BEAT-PCD (Better Experimental Approaches to Treat Primary Ciliary Dyskinesia) clinical research collaboration was launched by the European Respiratory Society (ERS) in 2020. It is a pan-European network of clinicians and scientists committed to promoting clinical, translational research and education in Primary Ciliary Dyskinesia (PCD). BEAT-PCD has the global vision of improving diagnosis and clinical care, expanding and developing further available research resources, setting a framework for clinical trials, engaging PCD patients in research activities and developing collaborations with other networks and relevant stakeholders.

Specific aims

  • Generate a multi-centre BEAT-PCD network that facilitates the investigation of PCD.
  • Create a pan-European PCD database registering gene mutations and specific combinations of variants responsible for causing PCD.
  • Perform international clinical trials for patients with PCD.
  • Improve PCD diagnosis and clinical patient care.
  • Promote education and patient/public engagement in the field of PCD in Europe.

Operational Aspects

To achieve those aims, seven work packages have been composed:

  • WP1: Project management and governance
  • WP2: Network of PCD research databases and collaborations
  • WP3: Patient engagement activities
  • WP4: Clinical trials
  • WP5: Improving PCD diagnosis
  • WP6: Improvement of clinical patient care
  • WP7: Dissemination of CRC activities and results

Stakeholders

Every clinician and researcher interested in the BEAT-PCD activities is welcome to join the network and be a member of the BEAT-PCD General Assembly.

At the core of the network is the BEAT-PCD Management Committee, which is comprised of the two chairs and the working group chairs and co-chairs, as well as an ERS and an ELF representative.

The BEAT-PCD Advisory Board ensures that all CRC activities are in line with current and previous initiatives in the field and to the benefit of all relevant stakeholders. It is comprised by the two chairs, the head of the ERN Lung PCD Core, the lead of the BEAT-PCD COST action training school, two patient representatives, three early career researchers in the field of PCD research and a representative of each funding industry collaborator.

Contact

If you are interested in more information about BEAT-PCD or would like to join the network, please see the Beat-PCD contact form.

Follow the progress of BEAT-PCD on twitter: @beatpcd