COVID-PCD: a participatory research study on the impact of COVID-19 in people with primary ciliary dyskinesia
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...
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European Respiratory Society
2021-03-01
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doaj-689388a382d74ad0b62d83d212e8d7772021-04-06T10:24:09ZengEuropean Respiratory SocietyERJ Open Research2312-05412021-03-017110.1183/23120541.00843-202000843-2020COVID-PCD: a participatory research study on the impact of COVID-19 in people with primary ciliary dyskinesiaEva S.L. Pedersen0Eugénie N.R. Collaud1Rebeca Mozun2Cristina Ardura-Garcia3Yin Ting Lam4Amanda Harris5Jane S. Lucas6Fiona Copeland7Michele Manion8Bernhard Rindlisbacher9Hansruedi Silberschmidt10Myrofora Goutaki11Claudia E. Kuehni12 Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland Primary Ciliary Dyskinesia Centre, NIHR Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK Primary Ciliary Dyskinesia Centre, NIHR Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK PCD Family Support Group, Ciliopathy Alliance, London, UK PCD Foundation, Minneapolis, MN, USA Selbsthilfegruppe Primäre Ciliäre Dyskinesie, Steffisburg, Switzerland Vorstand/Schriftführer des deutschen Vereins Kartagener Syndrom und Primäre Ciliäre Dyskinesie eV, PCD-betroffen, Wetzikon, Switzerland Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland 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.http://openres.ersjournals.com/content/7/1/00843-2020.full |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
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 Rindlisbacher Hansruedi Silberschmidt Myrofora Goutaki Claudia E. Kuehni |
spellingShingle |
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 Rindlisbacher Hansruedi Silberschmidt Myrofora Goutaki Claudia E. Kuehni COVID-PCD: a participatory research study on the impact of COVID-19 in people with primary ciliary dyskinesia ERJ Open Research |
author_facet |
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 Rindlisbacher Hansruedi Silberschmidt Myrofora Goutaki Claudia E. Kuehni |
author_sort |
Eva S.L. Pedersen |
title |
COVID-PCD: a participatory research study on the impact of COVID-19 in people with primary ciliary dyskinesia |
title_short |
COVID-PCD: a participatory research study on the impact of COVID-19 in people with primary ciliary dyskinesia |
title_full |
COVID-PCD: a participatory research study on the impact of COVID-19 in people with primary ciliary dyskinesia |
title_fullStr |
COVID-PCD: a participatory research study on the impact of COVID-19 in people with primary ciliary dyskinesia |
title_full_unstemmed |
COVID-PCD: a participatory research study on the impact of COVID-19 in people with primary ciliary dyskinesia |
title_sort |
covid-pcd: a participatory research study on the impact of covid-19 in people with primary ciliary dyskinesia |
publisher |
European Respiratory Society |
series |
ERJ Open Research |
issn |
2312-0541 |
publishDate |
2021-03-01 |
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. |
url |
http://openres.ersjournals.com/content/7/1/00843-2020.full |
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