PT  - JOURNAL ARTICLE
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
ED  - ,
AU  - Myrofora Goutaki
AU  - Claudia E. Kuehni
TI  - COVID-PCD: a participatory research study on the impact of COVID-19 in people with primary ciliary dyskinesia
AID  - 10.1183/23120541.00843-2020
DP  - 2021 Jan 01
TA  - ERJ Open Research
PG  - 00843-2020
VI  - 7
IP  - 1
4099  - http://openres.ersjournals.com/content/7/1/00843-2020.short
4100  - http://openres.ersjournals.com/content/7/1/00843-2020.full
SO  - erjor2021 Jan 01; 7
AB  - 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