Work Packages

The BEAT-PCD CRC 2026-2028 consists of 9 work packages (WP) focusing on improving diagnosis and clinical care, expanding and developing further available research resources including also neglected areas, setting a framework for clinical trials, engaging PCD patients in research activities and developing collaborations with other networks and relevant stakeholders.

WP1 – Project Management and Governance

Chairs: Myrona Goutaki & Amelia Shoemark

This work package coordinates the overall management of the BEAT-PCD collaboration. It oversees administrative, legal, and financial activities, maintains communication with the European Respiratory Society (ERS) and partner organizations, and ensures that project goals, milestones, and reports are delivered on time.

WP2 – Genetic Initiatives

Leads: Marie Legendre & Hannah Mitchison - Co-leads: Suzanne Crowley & Mafalda De Almeida Gomes

This group focuses on improving understanding of the genetic causes of PCD. Activities include maintaining the CiliaVar genetic database, strengthening collaborations with international genetics initiatives such as ClinGen, and studying how different genetic changes influence symptoms and disease severity in people with PCD.

WP3 – Improving PCD Diagnosis

Leads: Claire Jackson & Panayiotis Kouis - Co-leads: Mathieu Bottier, Loretta Müller & Nisreen Rumman

This work package aims to improve and standardize PCD diagnosis internationally. The group works to increase access to accurate diagnostic testing across Europe through education, shared resources, and collaboration between specialist and non-specialist centers. It also explores innovative diagnostic approaches, including artificial intelligence and mRNA-based methods, and promotes earlier diagnosis in newborns.

WP4 – PCD Bioresources and Biomarkers

Lead: Claire Hogg - Co-leads: James Chalmers, Lidia Perea & Felix Ringshausen

This group is developing an international collection of biological samples from people with PCD to support research and future clinical trials. The work package also aims to identify biomarkers that could help monitor disease progression and evaluate new PCD treatments.

WP5 – Clinical Outcome Measures

Leads: Bruna Rubbo & Eric Haarman - Co-leads: Pinelopi Anagnostopoulou, Christina Kavouridou, Jane Lucas, Tamara Paff & Phil Robinson

This work package focuses on improving how researchers measure disease outcomes in PCD clinical studies and trials. The group evaluates new biomarkers, digital health technologies, and other tools that may improve clinical research. It also studies factors affecting patient participation in clinical trials and supports international collaboration through the PCD Clinical Trials Network (PCD-CTN) and international PCD registry.

WP6 – Neglected Areas for PCD Research

Lead: Jean-François Papon - Co-leads: Vasiliki Gkatzou, Bernard Maitre, Lydia Newman & Johanna Raidt

This group promotes research in areas of PCD that have received less scientific attention. This includes ear, nose, and throat (ENT) complications, fertility issues, and other non-respiratory aspects of the disease. The work package also works to increase awareness of PCD among healthcare professionals outside respiratory medicine and encourages multidisciplinary care and research collaborations.

WP7 – Patient Engagement Activities

Leads: Deepa Patel & Emilie Wattelier - Co-leads: Lucy Dixon, Claudia Kuehni, Benedikt König & Trini López Fernández

This work package supports active involvement of patients and families in PCD research and advocacy activities. It strengthens collaboration between patient support groups across countries, helps organize the annual patient conference, and develops educational resources for patients and caregivers of different ages and backgrounds.

WP8 – Improving Clinical Care

Leads: Jobst Roehmel & Guillaume Thouvenin - Co-leads: Mieke Boon, Nagehan Emiralioglu & René Gaupmann

This group works to improve and harmonize clinical care for people with PCD across Europe. Activities include developing educational materials for healthcare professionals, organizing regular training activities, and running an annual international training school.

WP9 – Communications and Dissemination

Lead: Nena Karavasiloglou - Co-lead: Mine Yüksel Kalyoncu

This work package is responsible for sharing BEAT-PCD activities, research findings, and educational resources with healthcare professionals, researchers, patients, and the public. It also supports the involvement and development of Early Career Members (ECMs) within BEAT-PCD activities and initiatives.