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COVID-PCD – a participatory research study on the impact of COVID-19 in people with Primary Ciliary Dyskinesia

Eva S. L. Pedersen, Eugénie N. R. Collaud, Rebeca Mozun, Cristina Ardura-Garcia, Yin Ting Lam, Amanda Harris, Jane S. Lucas, Fiona Copeland, Michele Manion, Bernhard Rindlishbacher, Hansruedi Silberschmidt, Myrofora Goutaki, Claudia E. Kuehni
ERJ Open Research 2020; DOI: 10.1183/23120541.00843-2020
Eva S. L. Pedersen
1Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland
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  • ORCID record for Eva S. L. Pedersen
Eugénie N. R. Collaud
1Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland
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Rebeca Mozun
1Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland
2Graduate School for Cellular and Biomedical Sciences, University of Bern, Switzerland
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Cristina Ardura-Garcia
1Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland
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  • ORCID record for Cristina Ardura-Garcia
Yin Ting Lam
1Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland
2Graduate School for Cellular and Biomedical Sciences, University of Bern, Switzerland
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Amanda Harris
3rimary Ciliary Dyskinesia Centre, NIHR Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK
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Jane S. Lucas
3rimary Ciliary Dyskinesia Centre, NIHR Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK
4University of Southampton Faculty of Medicine, Academic Unit of Clinical and Experimental Medicine, Southampton, UK
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Fiona Copeland
5PCD Family Support Group, Ciliopathy Alliance, London, UK
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Michele Manion
6PCD Foundation, Minneapolis, Minnesota
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Bernhard Rindlishbacher
7Selbsthilfegruppe Primäre Ciliäre Dyskinesie, Switzerland
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Hansruedi Silberschmidt
8Vorstand / Schriftführer des deutschen Vereins Kartagener Syndrom und Primäre Ciliäre Dyskinesie e. V.; PCD-betroffen
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Myrofora Goutaki
1Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland
9Paediatric Respiratory Medicine, Children's University Hospital of Bern, University of Bern, Switzerland
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Claudia E. Kuehni
1Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland
9Paediatric Respiratory Medicine, Children's University Hospital of Bern, University of Bern, Switzerland
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  • For correspondence: claudia.kuehni@ispm.unibe.ch
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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

This manuscript has recently been accepted for publication in the ERJ Open Research. It is published here in its accepted form prior to copyediting and typesetting by our production team. After these production processes are complete and the authors have approved the resulting proofs, the article will move to the latest issue of the ERJOR online. Please open or download the PDF to view this article.

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.

This is a PDF-only article. Please click on the PDF link above to read it.

  • Received November 11, 2020.
  • Accepted November 14, 2020.
  • Copyright ©ERS 2020
http://creativecommons.org/licenses/by-nc/4.0/

This article is open access and distributed under the terms of the Creative Commons Attribution Non-Commercial Licence 4.0.

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COVID-PCD – a participatory research study on the impact of COVID-19 in people with Primary Ciliary Dyskinesia
Eva S. L. Pedersen, Eugénie N. R. Collaud, Rebeca Mozun, Cristina Ardura-Garcia, Yin Ting Lam, Amanda Harris, Jane S. Lucas, Fiona Copeland, Michele Manion, Bernhard Rindlishbacher, Hansruedi Silberschmidt, COVID-PCD patient advisory group, Myrofora Goutaki, Claudia E. Kuehni
ERJ Open Research Jan 2020, 00843-2020; DOI: 10.1183/23120541.00843-2020

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COVID-PCD – a participatory research study on the impact of COVID-19 in people with Primary Ciliary Dyskinesia
Eva S. L. Pedersen, Eugénie N. R. Collaud, Rebeca Mozun, Cristina Ardura-Garcia, Yin Ting Lam, Amanda Harris, Jane S. Lucas, Fiona Copeland, Michele Manion, Bernhard Rindlishbacher, Hansruedi Silberschmidt, COVID-PCD patient advisory group, Myrofora Goutaki, Claudia E. Kuehni
ERJ Open Research Jan 2020, 00843-2020; DOI: 10.1183/23120541.00843-2020
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