Table 1.
Overview of platforms and registries for collecting, harmonising, and sharing participant-level COVID-19-related data
| Pre-dated COVID-19 | Funding source | Population-specific restrictions | Data types (linkage to clinical data) | Observational or intervention data | Longitudinal or cross-sectional data | Community-developed standards for metadata or participant-level data | COVID-19 status | Harmonisation | Governance (controllers of access to the data) | Who can access the data | Metrics of success* | |
|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Registries | ||||||||||||
| American College of Radiology COVID-19 Imaging Research Registry (USA) | No | Professional organisation | Patients of all ages; with imaging examinations; in USA | Clinical, imaging (linked) | Observational | Longitudinal | Yes | Infected | Retrospective | DAC | Any group with an approved application | No |
| American College of Surgeons COVID-19 Registry (USA) | No | NS | Patients aged ≥18 years; admitted to the hospital; any location | Clinical | Observational | Longitudinal | No | Infected | Prospective | NS | NS | No |
| American Society for Hematology Research Collaborative COVID-19 Registry for Hematologic Malignancy (USA) | No | Donation | Patients of all ages across the world with haematological conditions | Clinical | Observational | Cross-sectional | No | Infected | Prospective and retrospective | NA† | NA† | Number of cases |
| American Society of Clinical Oncology Survey on COVID-19 in Oncology Registry (USA) | No | Foundation | Patients of all ages with cancer; in USA | Clinical | Observational | Longitudinal | Yes | Infected | Prospective | DAC | Any group with an approved application | Number of cases |
| British Association of Dermatologists Biologic and Immunomodulators Register (University of Manchester, UK) | Yes | Industry | People of all ages with psoriasis; in UK and Ireland | Clinical | Observational and intervention | Longitudinal | Yes | Infected and non-infected | Prospective | NS | Any group with an approved application | Number of participating centres |
| Cardiac Complications in Patients with SARS Corona virus 2 registry (University Medical Center Utrecht, Netherlands) | No | NS | Patients aged ≥18 years; any location with cardiovascular complications | Clinical | Observational | Longitudinal | Yes | Infected | Prospective | DAC | Any group with an approved application | Number of cases |
| Center for International Blood and Marrow Transplant Research COVID-19 Data Collection (USA) | Yes | Industry | Patients of all ages who are autologous; allogeneic haematopoietic cell transplant recipients; any location | Clinical | Observational | Longitudinal | No | Infected | Prospective | DAC and resource management team | In most cases the registry will run requested analysis; however, in rare instances individual participant-level data will be shared as well | Number of cases |
| Coronavirus and MS Reporting Database (Washington University, USA) | No | Professional organisation | Patients of all ages; with CNS demyelinating diseases; in North America | Clinical | Observational | Cross-sectional | No | Infected | Prospective | NA† | NA† | Number of cases |
| American Heart Association COVID-19 CVD Registry (USA) | No | Professional organisation, donation | Patients aged ≥18 years; with CVD; in USA | Clinical | Observational | Cross-sectional | No | Infected | Prospective and retrospective | DAC | Any group with an approved application | Number of cases |
| COVID-19 Dermatology Registry (Massachusetts General Hospital, USA) | No | Professional organisation | Patients of all ages; with dermatological manifestations associated with or before COVID-19 infection; any location | Clinical | Observational | Cross-sectional | No | Infected | Prospective | DAC | Any group with an approved application | No |
| COVID-19 Global Pediatric Rheumatology Database (Boston Children's Hospital, USA) | No | Foundation | Paediatric patients aged ≤18 years with rheumatic disease; any location (except EU) | Clinical | Observational | Cross-sectional | No | Infected | Prospective | DAC | Any group with an approved application | Number of cases |
| COVID-19 Registry (Rice University, USA) | No | University | People aged ≥18 years; in USA | Clinical | Observational | Longitudinal | No | Infected and non-infected | Prospective | Resource management team | Any group with an approved application | Number of cases |
| COVID-Hepatology Registry (Translational Gastroenterology Unit, Oxford University, UK) | No | Government, university, professional organisation | Patients of all ages; with liver disease or liver transplant; any location (except the Americas, China, Japan, North and South Korea, and Mongolia) | Clinical | Observational | Cross-sectional | No | Infected | Prospective | DAC | Any group with an approved application | Number of cases |
| Discovery Viral Infection and Respiratory Illness Universal Study COVID-19 Registry (Society of Critical Care Medicine, USA) | No | NGO | Patients of all ages; admitted to the hospital or intensive care unit; any location | Clinical | Observational | Longitudinal | Yes | Infected | Prospective | DAC | Only groups that contributed data or are otherwise part of the consortium | Number of cases |
| European Academy of Neurology Neuro-covid Registry (Austria) | No | Professional organisation | Patients aged ≥18 years; with neurological conditions; any location | Clinical | Observational | Longitudinal | No | Infected | Prospective | Resource management team | Only groups that contributed data or are otherwise part of the consortium | No |
| Extracorporeal Life Support Organization Registry (USA) | Yes | Professional organisation, donation | Patients aged ≥16 years; on extracorporeal membrane oxygenation; any location | Clinical | Observational | Longitudinal | Yes | Infected | Prospective | DAC | Only groups that contributed data or are otherwise part of the consortium | Number of cases |
| Global Hidradenitis Suppurativa COVID-19 Registry (University of California, San Francisco, USA) | No | NS | Patients of all ages; with hidradenitis suppurativa; any location | Clinical | Observational | Cross-sectional | No | Infected | Prospective | NA† | NA† | Number of cases |
| Global Registry of COVID-19 in Pediatric Cancer (St. Jude Children's Research Hospital, USA) | No | University, professional organisation | Patients aged ≤18 years; with cancer; any location | Clinical | Observational | Longitudinal | No | Infected | Prospective | NA† | NA† | Number of cases |
| Global Registry of COVID-19-related Diabetes (King's College London, UK, and Monash University, Australia) | No | University | Patients of all ages; with new-onset diabetes or acute complication of pre-existing diabetes; any location | Clinical | Observational | Longitudinal | No | Infected | Prospective | NA† | NA† | Number of cases |
| Health Outcome Predictive Evaluation for COVID 19 (St. Carlos Hospital, Spain) | No | NS | Patients of all ages who have been discharged (deceased or alive) from any hospital since September, 2020; any location | Clinical | Observational | Longitudinal | No | Infected | Prospective | NS | Only groups that contributed data or are otherwise part of the consortium | Number of participating centres |
| International COVID-19 and Pregnancy Registry (Centre HospitalierUniversitaire Vaudois, Switzerland) | No | University | Pregnant women not considered minors; any location | Clinical | Observational | Longitudinal | No | Infected | Prospective | Resource management team | Any group with an approved application | No |
| Lean European Open Survey for SARS-CoV-2 Infected Patients (University Hospital of Cologne and Goethe University Frankfurt, Germany) | No | Professional organisation | Patients of all ages; any location | Clinical | Observational | Cross-sectional | Yes | Infected | Prospective | DAC and resource management team | Any group with an approved application | Number of cases |
| Pediatric COVID-19 Case Registry (St Jude Children's Research Hospital, USA) | No | No funding | Patients aged <21 years; in USA | Clinical | Observational | Longitudinal | No | Infected | Prospective | DAC and resource management team | Any group with an approved application | Number of cases |
| Pregnancy Coronavirus Outcomes Registry (University of California, San Francisco Women's Health Clinical Research Center, USA) | No | University, private donations | Pregnant or recently pregnant women aged ≥13 years; in USA | Clinical | Observational | Longitudinal | No | Infected | Prospective | NA† | NA† | Number of cases |
| Psoriasis Patient Registry for Outcomes, Therapy and Epidemiology of COVID-19 Infection (Guy's and St Thomas' Hospital, UK) | No | Professional organisation, university | Patients of all ages; with psoriasis; any location | Clinical | Observational | Cross-sectional | No | Infected | Prospective | DAC | Any group with an approved application (except for commercial organisations) | Number of cases |
| SECURE-Alopecia (National and International Skin Registry Solutions, Ireland) | No | NGO | Patients of all ages; with alopecia; any location | Clinical | Observational | Cross-sectional | No | Infected | Prospective | NA† | NA† | Number of cases |
| SECURE-Atopic Dermatitis (National and International Skin Registry Solutions, Ireland) | No | NGO | Patients of all ages; with atopic dermatitis; any location | Clinical | Observational | Cross-sectional | No | Infected and non-infected | Prospective | NA† | NA† | Number of cases |
| SECURE-Celiac (Columbia University, USA) | No | Industry | Patients of all ages; with coeliac disease; any location | Clinical | Observational | Cross-sectional | No | Infected | Prospective | NA† | NA† | Number of cases |
| SECURE-Eosinophilic Esophagitis and Eosinophilic Gastrointestinal Diseases (Schneider Children's Medical Center in Israel, Israel) | No | NS | Patients of all ages; with eosinophilic gastrointestinal diseases; any location | Clinical | Observational | Cross-sectional | No | Infected | Prospective | NS | Any group with an approved application | Number of cases |
| SECURE-Inflammatory Bowel Disease (University of North Carolina at Chapel Hill, USA) | No | Industry | Patients of all ages; with inflammatory bowel disease; any location | Clinical | Observational | Cross-sectional | No | Infected | Prospective | DAC and resource management team | Any group with an approved application | Number of cases |
| SECURE-Liver (University of North Carolina at Chapel Hill) | No | Professional organisation | Patients of all ages; with chronic liver disease or post-liver transplant; in North and South America, China, Japan, and North and South Korea | Clinical | Observational | Cross-sectional | No | Infected | Prospective | NA† | NA† | Number of cases |
| SECURE-Psoriasis (Wake Forest School of Medicine, USA) | No | NS | Patients of all ages; with psoriasis; any location | Clinical | Observational | Cross-sectional | No | Infected | Prospective | NA† | NA† | Number of cases |
| SECURE-Sickle Cell Disease (edical College of Wisconsin, USA) | No | NS | Patients of all ages; with sickle cell disease; any location | Clinical | Observational | Cross-sectional | No | Infected | Prospective | NA† | NA† | Number of cases |
| SECURE-vascular anomalies (Children's Hospital of Philadelphia, USA) | No | NS | Patients of all ages; with vascular anomalies; any location | Clinical | Observational | Cross-sectional | No | Infected | Prospective | NA† | NA† | Number of cases |
| Society for Cardiovascular Magnetic Resonance COVID-19 Registry (USA) | No | NS | Patients of all ages; with cardiovascular complications and cardiovascular magnetic resonance data; any location | Clinical; imaging (linked) | Observational | Longitudinal | Yes | Infected | Prospective | DAC and data generator | Any group with an approved application | Number of participating centres |
| Society of Vascular and Interven. Neurology COVID-19 Registry (Cooper University Hospital, USA) | No | Professional organisation | Patients aged ≥18 years; with cerebrovascular complications; in USA, Spain, Egypt, and Romania | Clinical | Observational | Longitudinal | No | Infected | Prospective | Resource management team | Any group with an approved application | Number of participating centres |
| Surveillance of COVID-19 in Patients with T1D (T1D Exchange, USA) | No | Professional organisation, NGO, industry | Patients of all ages; with type 1 diabetes; in USA | Clinical | Observational | Longitudinal | No | Infected | Prospective | NA† | NA† | Number of data contributors |
| The COVID-19 and Cancer Consortium (Vanderbilt University Medical Center, USA) | No | NS | Patients aged ≥18 years; with cancer; in USA, EU, Argentina, Canada, Mexico, and UK | Clinical | Observational | Longitudinal | Yes | Infected | Prospective | NA† | NA† | Number of cases |
| The COVID-19 Global Rheumatology Alliance Registry (University of California, San Francisco, USA) | No | Industry | Patients aged >18 years; with rheumatic disease; any location (except EU) | Clinical | Observational | Cross-sectional | No | Infected | Prospective | DAC and resource management team | Only groups that contributed data or are otherwise part of the consortium | Number of cases |
| The European Alliance of Associations for Rheumatology COVID-19 Registry (Switzerland) | No | Professional organisation | Patients of all ages; with rheumatic disease; in EU | Clinical | Observational | Cross-sectional | No | Infected | Prospective | DAC and resource management team | Only groups that contributed data or are otherwise part of the consortium | Number of cases |
| The European Renal Association COVID-19 Database (University Medical Center Groningen, Netherlands) | No | Professional organisation, industry | Patients aged ≥18 years; with kidney disease; in EU countries bordering the Mediterranean region | Clinical | Observational | Longitudinal | No | Infected | Prospective | NA‡ | NA‡ | Number of cases |
| The UK Coronavirus Cancer Monitoring Project (University of Birmingham, UK) | No | University | Patients of all ages; with cancer; in UK | Clinical | Observational | Longitudinal | No | Infected | Prospective | NS | NS | Number of participating centres |
| The UK Paediatric Oncology Coronavirus Cancer Monitoring Project (University of Birmingham, UK) | No | University | Patients aged <16 years; with cancer; in UK | Clinical | Observational | Longitudinal | Yes | Infected | Prospective | NS | NS | Number of cases |
| Thoracic Cancers International COVID-19 Collaboration Registry (Fondazione Istituto di Ricovero e Cura a Carattere Scientifico Istituto Nazionale Tumori, Vanderbilt Uni. Medical Center, Italy) | No | Professional organisation, university | Patients of all ages; with thoracic cancer; any location | Clinical | Observational | Longitudinal | No | Infected | Prospective | NS | NS | Number of cases |
| Platforms | ||||||||||||
| Canadian COVID-19 Genomics Network–HostSeq Portal (Genome Canada, Canada) | No | Government | Patients of all ages; in Canada | Clinical; human omics (linkage not specified) | NS | NS | Yes | Infected | Prospective and retrospective | DAC | NA§ | NA§ |
| Canadian COVID-19 Genomics Network - VirusSeq Data Portal (Genome Canada, Canada) | No | Government | Patients of all ages; in Canada | Clinical; pathogen omics (linked) | Observational | Cross-sectional | Yes | Infected | Prespecified standard | Open access | Open access | Number of viral genome sequences |
| China National GeneBank DataBase (China) | Yes | Government | Patients of all ages; any location | Pathogen omics (unlinked) | Observational | Cross-sectional | Yes | Infected | Prespecified standard | Public data is open access; requests for controlled data overseen by reviewers or data owning organisation | Public data, open access; controlled data, any group with an approved application; private data, not accessible | No |
| Consortium for Clinical Characterization of COVID-19 by EHR (Harvard Medical School, USA) | No | Professional organisation, private foundation | Patients of all ages; any location | Clinical | Observational | Both | Yes | Infected | Retrospective | NS | NS | No |
| COVID-19 and MS—a global data sharing initiative (Multiple Sclerosis Data Alliance, Belgium) | No | Professional organisation, industry | Patients of all ages; with multiple sclerosis; any location | Clinical | Observational and interventional | Both | No | Infected | Prospective and retrospective | NA† | NA† | Number of cases |
| DNA Data Bank of Japan (Research Organization of Information and Systems, National Institute of Genetics, Japan) | Yes | Government | People of all ages; any location | Human omics (unlinked); pathogen omics (unlinked) | Observational | Cross-sectional | Yes | Infected and non-infected | Prespecified standard | Data generator | Open access | No |
| Electron Microscopy Data Bank (EMBL-EBI, UK) | Yes | Government | People of all ages; any location | Imaging (unlinked) | Observational | Cross-sectional | Yes | Infected and non-infected | Prespecified standard | Open access | Open access | Number of SARS-CoV-2 electron cryo-microscopy maps |
| Electron Microscopy Public Image Archive (EMBL-EBI, UK) | Yes | Government | People of all ages; any location | Imaging (unlinked) | Observational | Cross-sectional | Yes | Infected and non-infected | Prespecified standard | Open access | Open access | Number of entries for SARS-CoV-2 imaging data |
| European Genome-Phenome Archive (EMBL-EBI, UK) | Yes | Government | People of all ages; any location | Clinical; human omics (linked); pathogen omics (linked); imaging (linked) | Observational and interventional | Cross-sectional | Yes | Infected and non-infected | Prespecified standard | DAC | Any group with an approved application | Number of dataset results for COVID-19 |
| European Nucleotide Archive (EMBL-EBI, UK) | Yes | Government | People of all ages; any location | Human omics (unlinked); pathogen omics (unlinked) | Observational | Cross-sectional | Yes | Infected and non-infected | Prespecified standard | Open access to public data; data generator can restrict data access | Public data, open access; controlled data, any group with an approved application; private data, not accessible | Number of sequence results for COVID-19 |
| GenBank (NCBI-NLM, USA) | Yes | Government | People of all ages; any location | Human omics (unlinked); pathogen omics (unlinked) | Observational and interventional | Cross-sectional | Yes | Infected and non-infected | Prespecified standard | Open access | Open access | Number of SRA runs and nucleotide records for SARS-CoV-2 |
| Gene Expression Omnibus (NCBI-NLM, USA) | Yes | Government | People of all ages; any location | Human omics (unlinked); pathogen omics (unlinked) | Observational and interventional | Cross-sectional | Yes | Infected and non-infected | Prespecified standard | Open access | Open access | RNA and SRA sample results for SARS-CoV-2 |
| GeneWeaver (The Jackson laboratory, Baylor University, and The University of Tennessee, USA) | Yes | Government | People of all ages; any location | Human omics (unlinked) | Observational and interventional | Both | Yes | Infected and non-infected | Prespecified standard | Open access to public data; data generator can restrict data access | Public data, open access; controlled data, any group with an approved application; private data, not accessible | Human gene set results for COVID-19 and for SARS-CoV-2 |
| Global Initiative on Sharing All Influenza Data (GISAID) (Freunde von GISAID e.V., Germany) | Yes | Government | Patients of all ages; with influenza or coronavirus infection; any location | Pathogen omics (unlinked) | Observational | Cross-sectional | Yes | Infected | Prespecified standard | Resource management team | Any group with an approved application | Number of human COVID-19 genome sequence submissions |
| Infectious Diseases Data Observatory (Oxford University, UK) | Yes | Government | Patients of all ages; any location; with emerging pathogens or neglected diseases | Clinical | Observational and interventional | Longitudinal | Yes | Infected | Prospective and retrospective | DAC | Any group with an approved application | Number of observations and patients |
| International COVID-19 Data Alliance (Health Data Research UK, UK) | No | NGO, industry, private foundation | Patients of all ages; any location | Clinical | Observational and interventional | Both | No | Infected and non-infected | Each project has different data types, some standardized to dictionaries, others did not | Resource management team or DAC depending on dataset and nature of request | Only groups that contributed data or are otherwise part of the consortium | Number of datasets |
| National Institute of Health–National COVID Cohort Collaborative (National Center for Data to Health by National Center for Advancing Translational Sciences hub sites, USA) | No | Government | Patients of all ages; in USA | Clinical; human omics (linked); pathogen omics (linked); imaging (linked) | Observational | Longitudinal | Yes | Infected and non-infected | Prospective | DAC | Any group with an approved application | Number of cases |
| QMENTA imaging database (QMENTA, USA and Spain) | Yes | Industry | Patients of all ages; with imaging exam data; any location | Clinical; imaging (linked) | Observational | Cross-sectional | Yes | Infected and non-infected | Any format | Data generator | Registered users invited to access the images by the image uploaders | Number of COVID-19 images |
| The database of Genotypes and Phenotypes (NCBI-NLM, USA) | Yes | Government | People of all ages; any location | Clinical; human omics (linked); pathogen omics (linked) | NS | Both | Yes | Infected and non-infected | Prespecified standard | DAC | Any group with an approved application | Number of phenotype dataset and molecular dataset results for COVID-19 |
| The Immunology Database and Analysis Portal (University of California, San Francisco, USA; Stanford University, USA; University of Buffalo, USA; and Technion–Israel Institute of Technology, and Northrop Grumman, Israel) | Yes | Government | Patients of all ages; any location | Clinical; human omics (linked); pathogen omics (linked) | Observational and interventional | Both | Yes | Infected and non-infected | Prespecified standard | Data generator | Any group with an approved application | Number of studies and subjects for COVID-19 |
CVD=cardiovascular disease. DAC=data access committee. EBI=European Bioinformatics Institute. EMBL=European Molecular Biology Laboratory. NA=not applicable. NCBI=National Center for Biotechnology Information. NGO=non-governmental organisation. NLM=The National Library of Medicine. NS=not specified. SECURE=Surveillance Epidemiology of Coronavirus Under Research Exclusion. SRA=sequence read archive. T1D=type 1 diabetes.
*
Based on data obtained from the resources' websites in September, 2022.
†
Participant-level data will not be shared.
‡
Participant-level data will not be shared, but resource will conduct requested analyses.
§
Data are not yet available (platform is not launched even though data collection has started, or resource is not yet accepting data).