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

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

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BORIS DOI
10.48350/155657
Date of Publication
March 22, 2021
Publication Type
Article
Division/Institute

Institut für Sozial- ...

Author
Pedersen, Eva Sophie Lundeorcid-logo
Institut für Sozial- und Präventivmedizin (ISPM)
Collaud, Eugénie Noémie Rachel
Institut für Sozial- und Präventivmedizin (ISPM)
Mozún Torrico, Rebeca
Institut für Sozial- und Präventivmedizin (ISPM)
Ardura Garcia, Cristina
Institut für Sozial- und Präventivmedizin (ISPM)
Lam, Yin Ting
Institut für Sozial- und Präventivmedizin (ISPM)
Harris, Amanda
Lucas, Jane S
Copeland, Fiona
Manion, Michele
Rindlisbacher, Bernhard
Silberschmidt, Hansruedi
Goutaki, Myrofora
Institut für Sozial- und Präventivmedizin (ISPM)
Universitätsklinik für Kinderheilkunde
Kühni, Claudia
Institut für Sozial- und Präventivmedizin (ISPM)
Universitätsklinik für Kinderheilkunde
Subject(s)

600 - Technology::610...

300 - Social sciences...

Series
ERJ Open Research
ISSN or ISBN (if monograph)
2312-0541
Publisher
European Respiratory Society
Language
English
Publisher DOI
10.1183/23120541.00843-2020
PubMed ID
33778058
Description
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.
Handle
https://boris-portal.unibe.ch/handle/20.500.12422/56687
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FileFile TypeFormatSizeLicensePublisher/Copright statementContent
Pedersen_ERJOpenRes_2021.pdftextAdobe PDF836.09 KBAttribution-NonCommercial (CC BY-NC 4.0)publishedOpen
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