Information collected in the coronavirus disease 2019 (COVID-19) and primary ciliary dyskinesia (PCD) study

QuestionnaireTiming of distributionInformation collected
Registration questionnaireAt registrationLanguage, year of birth, consent to participate, e-mail address
Baseline questionnaireRight after registrationModule 1: Demographic information (country, region); contact information in case of hospital stay; history of COVID-19 infection (tests, test results, severity of infection, symptoms, people in household who had a COVID-19 infection), other infections
Module 2: PCD diagnosed by a physician (study eligibility question), PCD in close family, prior diagnostic tests for PCD and test results (nasal nitric oxide, high-speed video microscopy, electron microscopy, genetic test), year of PCD diagnosis, situs inversus, congenital heart defect, bronchiectasis, infections (bacteria, viruses, fungi), lung function, height, weight, airway clearance therapy, physiotherapy, oxygen use, antibiotic treatments, hospital stays, flu vaccinations
Comorbidities and their treatments including asthma, hypertension, diabetes, heart failure, primary immunodeficiency, cancer, inflammatory bowel disease, and stroke
Module 3 (adapted from the standardised FOLLOW-PCD patient questionnaire [26]): Current symptoms: Symptoms from nose or ears, hearing problems, headaches, snoring, coughing, coughing up mucus, wheezing, shortness of breath, chest pain, fever, general feeling of being unwell
Module 4 (adapted from the standardised FOLLOW-PCD patient questionnaire [26]): Employment/educational status, profession, days missed from work due to PCD, mode of transportation to work/school, highest level of education Level of physical activity, types of sports/activities regularly performed, smoking status, number of cigarettes per day, years of smoking, year of quitting smoking, anyone else in household smoking, nutrition (appetite in last 3months, additional drink supplements, other supplements), living conditions (type of home, number of bedrooms in home, access to garden/yard), change in living condition due to COVID-19 pandemic
Follow-up questionnaireWeekly (period can be adapted)Current symptoms (in the past 7days)
Recent COVID-19 infections: Contact with health professional due to COVID-19 infection, medication taken in the past 7days, change in usual therapies past 7days
Contact behaviour in the past 7 days: Activities (e.g. stayed at home, went grocery shopping, went out for exercise, went occasionally or regularly to workplace/school, etc.), use of public transportation, possible to keep 2 m distance from other people during public transport/at work/at school, number of people having close contact with
Hospitalisation questionnaireIf a participant is hospitalisedDate of hospitalisation, hospital unit in which patient was treated, duration of hospital stays, treatments, recommendation after discharge
Thematic questionnairesIn irregular intervals as research questions arisePotential topics: Availability of PCD treatments during COVID-19 pandemic, physical activity during COVID-19 pandemic, protection measures at schools and workplaces, e.g. masks, plastic face shields, gloves, etc., anxieties and fears related to the COVID-19 pandemic