The BEAT-PCD CRC 2023-2026 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.
WP 1 - Project management and governance
BEAT-PCD Management Committee
WP Objectives:
To manage the administrative/ legal/ financial aspects
To maintain communication with the ERS/ partners/ relevant stakeholders
To ensure milestones and deliverables are fulfilled and timely reported
WP 2 - Open access database of PCD disease causing
Chair: Suzanne Crowley - Co-Chairs: Hannah Mitchison & Marie Legendre
WP Objectives:
To maintain the CiliaVar database and increase the number of centers inputting data annually
To develop relationships with large companies testing for PCD to enter further cases into the database
To identify genotype, phenotype relationships in PCD.
WP 3 - Patient engagement activities
Chair: Jobst Roehmel - Co-Chairs: Laura Behan, Lucy Dixon, Trini López Fernández & Claudia Kuehni
WP Objectives:
To support further the communication and collaboration of PCD support groups, individual patients, and their families in a joined network
To promote active involvement of patients in research and support participatory research activities
To develop educational material for patients and caretakers of all ages and nationalities, based on gaps identified previously, and disseminate material accordingly
WP 4 - PCD bioresources & biomarkers
Chair: Claire Hogg - Co-Chairs: Susana Lopes, Lidia Perea & Felix Ringshausen
WP Objectives:
To develop an international bioresource of samples from PCD samples which can be used to facilitate academic research, clinical trial outcomes and testing of novel PCD specific therapies
To run a proof of concept study using the biobank to identify key biomarkers of PCD for clinical trials
WP 5 - Clinical outcome measures
Chair: Jane Lucas - Co-Chairs: Pinelopi Anagnostopoulou, Eric Haarman, June Marthin & Phil Robinson
WP Objectives:
To define and promote the use of reliable clinical outcome measures and biomarkers for PCD trials and to assess the usefulness of new potential outcome measures, incorporating new technologies and digital health aspects
To study feasibility factors related to patient identification, recruitment, adherence, study management, required resources and reasons of non-participation or dropout for clinical trials in PCD
To promote the PCD-CTN and the international PCD registry (in collaboration with ERN-LUNG (PCD core)), and further co-ordinate our joint efforts and exchange expertise
WP 6 - Neglected areas for PCD research
Chair: Jean-François Papon - Co-Chairs: Bernard Maitre, Johanna Raidt
WP Objectives:
To increase awareness of PCD in non-respiratory healthcare professionals and improve multidisciplinary collaboration for PCD care
To promote development of collaborative studies on less-researched areas, including but not limited to ENT, such as the EPIC-PCD study, and fertility problems and improve the knowledge on PCD
WP 7 - Improving PCD diagnosis
Chair: Claire Jackson - Co-Chairs: Mathieu Bottier, Panayiotis Kouis, Nisreen Rumman
WP Objectives:
To improve accuracy and accessibility of PCD diagnosis across Europe through education and sharing resources
To use of digital technologies (such as Artificial Intelligence) to standardize and improve access to PCD diagnostics in non-specialist centres
To work towards standardisation and unification of PCD diagnostic testing internationally
WP 8 - Clinical standardisation and education
Chair: Guillaume Thouvenin - Co-Chairs: Mieke Boon, Eleonora Dehlink & Nagehan Emiralioglu
WP Objectives:
To promote standardisation of clinical practices in PCD care across Europe
To develop educational resources and organise regular training activities and an annual training school
WP 9 - Early Career members (ECMs) and dissemination of CRC activities and results
Chairs: Yin Ting Lam & Katie Horton
WP Objectives:
To ensure involvement of ECMs in all BEAT-PCD activities and promote and support ECMs activities
To disseminate widely all CRC activities and results to other physicians and researchers, patients, the public and all relevant stakeholders
