Table 1 Overview of the aims of data collection, when data collection started and ended
Country | Dataset | Stated aims | Start date | End date |
|---|---|---|---|---|
Group 1 | ||||
Canada | Canadian COVID-19 Antibody and Health Survey (CCAHS) [31, 32] | To evaluate the extent of the health status associated with the COVID-19 pandemic such as active COVID-19 infections and the prevalence of COVID-19 antibodies among a representative sample of Canadians. The survey also provides a platform to explore emerging public health issues, including the impact of COVID-19 on health and social wellbeing To determine the prevalence of post-COVID symptoms in the country: 1. Which symptoms occur 2. Assess whether such individuals are using the healthcare system 3. To understand pre-existing conditions and nonassociated conditions | April 2022 | June 2023 |
Switzerland | Zurich Vaccine Cohort (part of the Swiss Immunitas Research Program) [33] | To investigate the immune response to COVID vaccines licensed in Switzerland in the Zurich population | April 2021 | April 2024 |
United Kingdom | Office for National Statistics COVID-19 Infection survey (ONS-CIS) [34,35,36] | To estimate the extent of transmission and ongoing rates of infection in the United Kingdom | April 2020 | March 2023 |
Group 2 | ||||
Belgium | To assess, among people with a recent COVID-19 infection, the evolution of their physical, mental and social health over the medium (min 3 months) and long term (max 2 years) and the factors associated with an (un)favourable evolution 1. Assess the type and duration of post-COVID condition (PCC) symptoms over time (that is, between 3 months and 2 years after infection) and in the different follow-up periods (that is, according to different COVID-19 variants and seasons) 2. Assess the determinants of short (min 3 months) and long term (max 2 years) PCC symptoms such as underlying chronic conditions, severity of the infection, hospitalisation, socioeconomic status, vaccination status, or health behaviours 3. Assess the short and long term evolution of (a) quality of life, (b) mental health, (c) functional limitations and (d) social contacts and employment among people with PCC compared with those without persistent COVID-19 symptom and with a similar sociodemographic sample of the general population not infected with COVID-19 | April 2021 | April 2023 | |
Germany | German National Pandemic Cohort Network (NAPKON) [39,40,41,42] | To establish a standardized, high-quality data and biosample collection on patients, citizens and controls with comparator respiratory infections 1. Investigate frequency, severity and distinct phenotypes of COVID-19 and post-COVID-19 syndrome (PCS) in the German population and identify long-term clinical trajectories of PCS 2. Identify genomic, epigenomic, transcriptomic, proteomic and metabolomic signatures predicting course and outcome of acute and post-acute COVID-19 3. Decipher further central pathophysiologic mechanisms of specific COVID-19 related pathologies to inform development of therapies 4. Establish commonalities and differences between COVID-19 and other forms of respiratory tract infections, pneumonia and acute respiratory distress syndrome (ARDS) in detail 5. Understand reasons for development of acute or post-acute COVID-19 in SARS-CoV-2 vaccinated patients | July 2020 | Nov 2022 |
Netherlands | To assess whether the prevalence of fatigue, myalgia and other symptoms after COVID-19 exceeds the background prevalence in the general population, as well as prevalence in people with acute symptoms who tested negative for SARS-CoV-2. Further, to assess whether it is possible to predict which individuals will go on to experience persistent symptoms | Spring 2021 | Spring 2023 | |
Switzerland | Zurich Coronavirus Cohort (part of the Swiss Immunitas Research Program) [45, 46] | To investigate the long-term clinical outcomes, immune responses, transmission pathways and viral genetics in a representative, population-based cohort of persons infected with the coronavirus and their close contacts in the Canton of Zurich | August 2020 | August 2023 |
Group 3 | ||||
Italy | Analysis and Response Strategies for the Long-Term Effects of COVID-19 Infection (Long-CoViD CCM) [47, 48] | Aims developed by the national project. Working on the first objective of the national project to estimate the cost of COVID-19 infection to the health service: 1. To indirectly assess the impact of long COVID by comparing healthcare utilization rates of exposed (previous SARS-CoV-2 infection) and unexposed (uninfected) 2. To assess utilization by care setting and epidemic phase of acute infection 3. “The aim of this project is to collect, retrospectively, data about patients who were positive […] then they became negative […] comparing to other patients that were negative […] to see what happens after a COVID patient became negative. In terms of hospital admissions, in terms of drugs administered, laboratory exams and diagnostic imaging and the related costs of these” | February 2020 | December 2021 |
Netherlands | NIVEL Combined Primary Care Dataset (PCD) & Persistent Complaints after COVID-19 Project [49,50,51] | To characterize long COVID symptoms including providing insight into the nature, severity and duration of complaints, the risk factors for and underlying causes of long COVID and to map out the so-called care pathways of individuals with long COVID | April 2021 | April 2022 |
Sweden | SCIFI-PEARL (Swedish Covid-19 Investigation for Future Insights—a Population Epidemiology Approach using Register Linkage) project [52, 53] | A large-scale effort to assemble a rich database for the study of Covid-19 epidemiologically in real time, i.e., with the requirement that data would be regularly and sufficiently frequently updated. The importance of not only focusing on COVID-19 patients was also recognized, making the inclusion of a large comparison cohort reflecting the general population another key asset. 1. To descriptively characterize individuals with COVID-19 (overall, hospitalized, intensive care unit (ICU) treated, deaths and in important subgroups) in terms of sociodemographics, various risk factors (for example, comorbidity and co-medication), geographic distribution and timing, among others. Further, to describe how the epidemic and the characteristics of the affected patient group change over time, that is, the so-called natural history of the epidemic in relation to the population. 2. To quantify the impact and importance of comorbidities (in particular, respiratory and cardiovascular, diabetes and obesity), severity of and co-medications for concomitant disease, sociodemographics and other risk factors, as well as protective measures and vaccinations, on risk of various endpoints. Some anticipated endpoints include developing COVID-19, being hospitalized for COVID-19, emergency/ICU care, treatments, specific care, hospitalization duration, prognosis, death and in survivors, long-term outcomes up to 3 years. Various study designs and methods as appropriate will be employed, including case-cohort, case-control and interrupted time series study designs and machine learning methods. 3. To develop and periodically update prediction models for COVID-19 occurrence and prognosis and evaluate how this impacts healthcare resource use, including the need for ICU treatment. Use of machine learning methods will be important here. Secondary aims include:1. Treatment effects of medicines and other healthcare interventions, including novel indications for established treatments and vaccinations and possible side effects related to COVID-19. 2. Resource use in the healthcare system, at the individual level and at societal level (hospital resources, measures, medicines and costs, among others) 3. Study the effectiveness of vaccination programs and possible adverse reactions in the population. 4. Consequences of the COVID-19 pandemic including future vaccination programs on drug use, health care and other societal functions in the population. 5. Other upcoming questions and information gaps from society, healthcare and the scientific community (if these are outside the above specified issues, may need additional supplemental ethical application) | 2025 | |
United Kingdom | CVD-COVID-UK aims to understand the relationship between COVID-19 and cardiovascular diseases such as heart attack, heart failure, stroke and blood clots in the lungs. COVID-IMPACT expands the approach to examine the impact of COVID-19 on other health conditions and their related risk factors | October 2020 | Ongoing: data collection covered by control of patient information (COPI) notices | |
Group 4 | ||||
Belgium | Post-COVID pathway [59] | To have a quality indicator of the guideline that has been developed, the number of patients and whether they receive care in accordance with the guideline | July 2022 | Ongoing: individuals enrolled in the care pathway, funded by social health insurance |
Canada | Post-COVID-19 Interdisciplinary Clinical Care Network (PC-ICCN) [60,61,62,63] | To identify, implement and evaluate clinical care programs and health policy initiatives that improve the care of patients with persistent symptoms post COVID‐19 using a learning health system approach Aim to use the data for long term research and to tweak services/advocate for different services. At the heart of their objectives is improving care offered to long COVID patients and to “provide services relevant to needs”: (a) to demonstrate the ability to stand up interdisciplinary clinics offering care and education to patients suffering from long COVID, with standardized follow up and data capture (b) to acquire the expertise and experience to deliver high quality interdisciplinary care (c) to develop accessible tools for primary care physicians and patients to enable capacity building with that acquired expertise and (d) to use data acquired in this context to inform the evolution of care models The secondary goals were to normalize the embedding of research into clinical care and to create a culture of collaboration across different clinical and research teams | July 2020 | Ongoing: tied to clinics, which shifted online in spring 2023 |
Germany | Outpatient treatment of COVID-19 infections (ABC19 study) [64] | To collect long-term and systematic data from the outpatient care of COVID-19 patients and to better understand the course of the disease in COVID-19 patients. In particular, examining the influence of comorbidities on the course of COVID-19 | March 2020 | No defined endpoint |
Italy | National surveillance on the long-COVID condition | To define the number and characteristics of centres assisting patients with long COVID manifestations in Italy | February 2022 | May 2022 |
England | To understand the longitudinal patient journey and support operational, clinical and research activities and allow a more granular understanding of healthcare access for groups who experience health inequalities | July 2021 | Ongoing: tied to clinics. Individuals followed until discharged from clinics | |
Group 5 | ||||
Aotearoa New Zealand | To estimate the clinical, quality of life and economic impacts of long COVID and provide a means to continually monitor health outcomes and inequities | July 2023 | Ongoing: surveys follow-up for 6 months, beyond which followed in EHRs |