Move-PCD: A multicentre longitudinal randomized controlled trial on the effect of a 6-month individualized and supervised physical activity program on quality of life in children, adolescents, and adults with Primary Ciliary Dyskinesia

<bold>Background:</bold> Primary Ciliary Dyskinesia (PCD) is a rare genetical disease characterised by malfunction of the motile cilia leading to impaired muco-ciliary clearance in the airways. Physical activity (PA) has been promoted as part of the supportive therapy for people with PCD (pwPCD), which aims to minimise disease progression, and improve patients' quality of life (QoL). To date, there is no scientific evidence to support this recommendation. <bold>Methods:</bold> This multicentre, randomized controlled trial will evaluate the effect of a 6-months individualized and supervised PA program on QoL in pwPCD. The intervention group receives an individual sports program, while the control group is encouraged to continue PA as usual. A QoL-PCD questionnaire, motor test and lung function will be carried out at regular visits in both groups. PA will be recorded by activity trackers. The main objective is to estimate the difference in change in QoL between intervention and control at 6 months in the physical function domain. Thus, the full analysis set includes all randomised patients. Analyses are conducted using the intention-to-treat principle. <bold>Results:</bold> Recruitment will start in March 2024 and we will present the first results at the ERS Congress. <bold>Conclusion:</bold> We hypothesise that the support of an individualised and supported PA programme will result in higher PA and QoL. In the medium and long term, this could improve patients' participation in social and professional life, and in the adherence to treatment, which could reduce future disease progression.