COVID-PCD: a participatory research study on the impact of COVID-19 in people with primary ciliary dyskinesia
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Abstract
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.
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SciScore for 10.1101/2020.11.11.20229922: (What is this?)
Please note, not all rigor criteria are appropriate for all manuscripts.
Table 1: Rigor
Institutional Review Board Statement Consent: Study procedures: All aspects of the COVID-PCD study are online, including registration and consent and completing the baseline questionnaire, weekly questionnaires, information on hospitalisation, and occasional thematic questionnaires (figure 1).
IRB: Ethics: The Bern Cantonal Ethics Committee (Kantonale Ethikkomission Bern) has approved this study (Study ID: 2020-00830).Randomization not detected. Blinding not detected. Power Analysis not detected. Sex as a biological variable Two thirds of participants are female (n=340; 61%) and all age-groups are well represented with 172 (31%) less than 15 years, 136 (24%) aged 15 to 29 years, 154 Table 2: Resources
… SciScore for 10.1101/2020.11.11.20229922: (What is this?)
Please note, not all rigor criteria are appropriate for all manuscripts.
Table 1: Rigor
Institutional Review Board Statement Consent: Study procedures: All aspects of the COVID-PCD study are online, including registration and consent and completing the baseline questionnaire, weekly questionnaires, information on hospitalisation, and occasional thematic questionnaires (figure 1).
IRB: Ethics: The Bern Cantonal Ethics Committee (Kantonale Ethikkomission Bern) has approved this study (Study ID: 2020-00830).Randomization not detected. Blinding not detected. Power Analysis not detected. Sex as a biological variable Two thirds of participants are female (n=340; 61%) and all age-groups are well represented with 172 (31%) less than 15 years, 136 (24%) aged 15 to 29 years, 154 Table 2: Resources
Software and Algorithms Sentences Resources (REDCap) platform developed at Vanderbilt University (www.project-redcap.org) (27). REDCapsuggested: (REDCap, RRID:SCR_003445)Results from OddPub: We did not detect open data. We also did not detect open code. Researchers are encouraged to share open data when possible (see Nature blog).
Results from LimitationRecognizer: We detected the following sentences addressing limitations in the study:Strengths and limitations: A key feature and major strength of this study is the participatory approach where people with PCD together with the team of researchers shape the study, recruit participants, and interpret and decide which results should be presented on the study website. The close collaboration between people with PCD and researchers ensures the relevance for participants and makes sure that study material is meaningful for people with PCD. It may also positively influence response rate in the weekly follow-up questionnaires. Another strength is the web-based study design which allows participants to contribute their data to the database in real time. This limits the risk of recall bias as participants only report symptoms from the last seven days, and there is no delay caused by data entry as participants enter data themselves into the database. The PCD support groups provided essential inputs to the study questionnaires and study design. The broad inclusion criteria allowing people of any age from anywhere in the world to participate is another strength of the study. The COVID-PCD study is one of the largest international studies including data reported directly from people with a rare disease. COVID-PCD not only covers infection rates, severity of symptoms, and prognosis of COVID-19 but also studies factors related to the COVID-19 pandemic such as social isolation and physical activity habits. Additionally, special topics can be studied at short notice using ex...
Results from TrialIdentifier: We found the following clinical trial numbers in your paper:
Identifier Status Title NCT04602481 Recruiting COVID-19 in People With Primary Ciliary Dyskinesia Results from Barzooka: We did not find any issues relating to the usage of bar graphs.
Results from JetFighter: We did not find any issues relating to colormaps.
Results from rtransparent:- Thank you for including a conflict of interest statement. Authors are encouraged to include this statement when submitting to a journal.
- Thank you for including a funding statement. Authors are encouraged to include this statement when submitting to a journal.
- No protocol registration statement was detected.
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