COVID-PCD: a participatory research study on the impact of COVID-19 in people with primary ciliary dyskinesia.

Autor:	Pedersen ESL; Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland., Collaud ENR; Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland., Mozun R; Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.; Graduate School for Cellular and Biomedical Sciences, University of Bern, Switzerland., Ardura-Garcia C; Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland., Lam YT; Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.; Graduate School for Cellular and Biomedical Sciences, University of Bern, Switzerland., Harris A; Primary Ciliary Dyskinesia Centre, NIHR Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK., Lucas JS; Primary Ciliary Dyskinesia Centre, NIHR Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK.; University of Southampton Faculty of Medicine, Academic Unit of Clinical and Experimental Medicine, Southampton, UK., Copeland F; PCD Family Support Group, Ciliopathy Alliance, London, UK., Manion M; PCD Foundation, Minneapolis, MN, USA., Rindlisbacher B; Selbsthilfegruppe Primäre Ciliäre Dyskinesie, Steffisburg, Switzerland., Silberschmidt H; Vorstand/Schriftführer des deutschen Vereins Kartagener Syndrom und Primäre Ciliäre Dyskinesie eV, PCD-betroffen, Wetzikon, Switzerland., Goutaki M; Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.; Paediatric Respiratory Medicine, Children's University Hospital of Bern, University of Bern, Bern, Switzerland., Kuehni CE; Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.; Paediatric Respiratory Medicine, Children's University Hospital of Bern, University of Bern, Bern, Switzerland.
Jazyk:	angličtina
Zdroj:	ERJ open research [ERJ Open Res] 2021 Mar 22; Vol. 7 (1). Date of Electronic Publication: 2021 Mar 22 (Print Publication: 2021).
DOI:	10.1183/23120541.00843-2020
Abstrakt:	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. Competing Interests: Conflict of interest: E.S.L. Pedersen has nothing to disclose. Conflict of interest: E.N.R. Collaud has nothing to disclose. Conflict of interest: R. Mozun has nothing to disclose. Conflict of interest: C. Ardura-Garcia has nothing to disclose. Conflict of interest: Y.T. Lam has nothing to disclose. Conflict of interest: A. Harris has nothing to disclose. Conflict of interest: J.S. Lucas has nothing to disclose. Conflict of interest: F. Copeland has nothing to disclose. Conflict of interest: M. Manion has nothing to disclose. Conflict of interest: B. Rindlishbacher has nothing to disclose. Conflict of interest: H. Silberschmidt has nothing to disclose. Conflict of interest: M. Goutaki has nothing to disclose. Conflict of interest: C.E. Kuehni has nothing to disclose. (Copyright ©ERS 2021.)
Databáze:	MEDLINE
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