TY - JOUR T1 - COVID-PCD: a participatory research study on the impact of COVID-19 in people with primary ciliary dyskinesia JF - ERJ Open Research JO - erjor DO - 10.1183/23120541.00843-2020 VL - 7 IS - 1 SP - 00843-2020 AU - Eva S.L. Pedersen AU - Eugénie N.R. Collaud AU - Rebeca Mozun AU - Cristina Ardura-Garcia AU - Yin Ting Lam AU - Amanda Harris AU - Jane S. Lucas AU - Fiona Copeland AU - Michele Manion AU - Bernhard Rindlisbacher AU - Hansruedi Silberschmidt AU - Myrofora Goutaki AU - Claudia E. Kuehni A2 - , Y1 - 2021/01/01 UR - http://openres.ersjournals.com/content/7/1/00843-2020.abstract N2 - COVID-PCD is a participatory study initiated by people with primary ciliary dyskinesia (PCD) who have an essential vote in all stages of the research from the design of the study to the recruitment of participants, and interpretation and communication of the study results. COVID-PCD aims to collect epidemiological data in real-time from people with PCD throughout the pandemic to describe incidence of coronavirus disease 2019 (COVID-19), symptoms and course of disease; identify risk factors for prognosis; and assess experiences, wishes and needs.The study is advertised through patient support groups and participants register online on the study website (www.covid19pcd.ispm.ch). The study invites persons of any age from anywhere in the world with a suspected or confirmed PCD. A baseline questionnaire assesses details on PCD diagnosis, habitual symptoms and COVID-19 episodes that occurred before study entry. Afterwards, participants receive a weekly follow-up questionnaire with questions on incident severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections, current symptoms, social contact behaviour and physical activity. Occasional thematic questionnaires are sent out focussing on emerging questions of interest chosen by people with PCD. In case of hospitalisation, patients or family members are asked to obtain a hospital report. Results are continuously analysed and summaries put online.The study started recruitment on April 30, 2020, and 556 people with PCD completed the baseline questionnaire by November 2, 2020. The COVID-PCD study is a participatory study that follows people with PCD during the COVID-19 pandemic, helps to empower affected persons, and serves as a platform for communication between patients, physicians and researchers.The COVID-PCD study is a longitudinal participatory study that follows people with #PCD during the #COVID19 pandemic, empowers people who have PCD, and provides a platform for communication between patients, physicians and researchers https://bit.ly/3fGi2DV ER -