Primary ciliary Dyskinesia (PCD) is a rare genetic, multi-organ disease. Previous European initiatives including two ERS Task Forces (2006-2009/ 2014-2016), an FP7 funded project (BESTCILIA 2012-2015), and the EU COST Action BEAT-PCD (2015-2019) improved awareness, diagnosis and clinical care for patients with PCD. Despite these advances, diagnosis remains complex with inequalities between countries and the majority of patients remain undiagnosed. Treatment is based on expert opinion and is borrowed from other diseases such as cystic fibrosis. For a rare disease such as PCD, international collaboration is essential to improve patient diagnosis and care. Therefore, the BEAT-PCD ERS CRC aims to advance clinical and translational research in PCD through building upon the foundations set by the previous collaborative initiatives and the BEAT-PCD network.
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. The CRC consists of seven work packages covering different aspects of PCD research.
Every clinician and researcher interested in the BEAT-PCD activities is welcome to join the network and become a member. At the core of the network, there is the BEAT-PCD management committee, led by the two chairs Amelia Shoemark and Myrofora Goutaki. The PCD research team of ISPM Bern leads several projects in the framework of BEAT-PCD and besides Dr. Goutaki, Prof. Claudia Kuehni participates in the management committee and Yin Ting Lam joins the CRC’s advisory board as a PhD representative.
