Abstract
Introduction COVID-PCD is a participatory study initiated by people with 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 COVID-19, symptoms, and course of disease; identify risk factors for prognosis; and assess experiences, wishes, and needs.
Methods 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 SARS-CoV-2 infections, current symptoms, social contact behaviour, and physical activity. Occasional thematic questionnaires are sent out focusing 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.
Conclusion 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.
Footnotes
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Conflict of interest: Dr. Pedersen has nothing to disclose.
Conflict of interest: Dr. Collaud has nothing to disclose.
Conflict of interest: Dr. Mozun has nothing to disclose.
Conflict of interest: Dr. Ardura-Garcia has nothing to disclose.
Conflict of interest: Dr. Lam has nothing to disclose.
Conflict of interest: Dr. Harris has nothing to disclose.
Conflict of interest: Dr. Lucas has nothing to disclose.
Conflict of interest: Dr. Copeland has nothing to disclose.
Conflict of interest: Dr. Manion has nothing to disclose.
Conflict of interest: Dr. Silberschmidt has nothing to disclose.
Conflict of interest: Dr. Goutaki has nothing to disclose.
Conflict of interest: Dr. Kuehni has nothing to disclose.
Conflict of interest: Dr. Rindlisbacher has nothing to disclose.
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- Received November 11, 2020.
- Accepted November 14, 2020.
- Copyright ©ERS 2020
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