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

Pedersen, Eva S.L.; Collaud, Eugénie N.R.; Mozun, Rebeca; Ardura-Garcia, Cristina; Lam, Yin Ting; Harris, Amanda; Lucas, Jane S; Copeland, Fiona; Manion, Michele; Rindlisbacher, Bernhard; Silberschmidt, Hansruedi; Goutaki, Myrofora; Kuehni, Claudia E. (2021). COVID-PCD: a participatory research study on the impact of COVID-19 in people with primary ciliary dyskinesia [protocol]. ERJ Open Research, 7(1), 00843-2020. European Respiratory Society 10.1183/23120541.00843-2020

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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.

Item Type:

Journal Article (Further Contribution)

Division/Institute:

04 Faculty of Medicine > Department of Gynaecology, Paediatrics and Endocrinology (DFKE) > Clinic of Paediatric Medicine
04 Faculty of Medicine > Pre-clinic Human Medicine > Institute of Social and Preventive Medicine (ISPM)

Graduate School:

Graduate School for Cellular and Biomedical Sciences (GCB)

UniBE Contributor:

Pedersen, Eva S L; Collaud, Eugénie Noémie Rachel; Mozún Torrico, Rebeca; Ardura Garcia, Cristina; Lam, Yin Ting; Goutaki, Myrofora and Kühni, Claudia

Subjects:

600 Technology > 610 Medicine & health
300 Social sciences, sociology & anthropology > 360 Social problems & social services

ISSN:

2312-0541

Publisher:

European Respiratory Society

Funders:

[4] Swiss National Science Foundation

Language:

English

Submitter:

Andrea Flükiger-Flückiger

Date Deposited:

08 Apr 2021 13:31

Last Modified:

09 Apr 2021 07:07

Publisher DOI:

10.1183/23120541.00843-2020

PubMed ID:

33778058

BORIS DOI:

10.48350/155657

URI:

https://boris.unibe.ch/id/eprint/155657

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