Rubric Assessments (20)
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Assessment
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Metrics
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Date
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Target
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Project
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The structure of the repository permits efficient discovery of data and metadata by end users.
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The repository uses a standardized protocol to permit access by users.
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The repository provides contact information for staff to enable users with questions or suggestions to interact with repository experts.
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The repository maintains licenses to manage data access and use.
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A description of the methods used to acquire the data is provided.
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The repository is findable on search engine
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The contact information is valid (repository experts answer the email, email is valid)
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The repository permits data sharing (or a summary of their data) thanks to scientific articles and/or dashboard
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The registry uses of a controlled vocabulary (COVID-19 CRF or data dictionary)
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The repository uses a FAIR controlled vocabulary (like existing clinical-epidemiological standards like ICD 9-11, CDASH, SNOMED, LOINC or existing ISARIC/WHO CRF)
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The registry uses links to related platforms (data contextualisation (related resources))
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The repository provides information about who and how is data entered
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ASCO
|
World Health Organisation COVID registries assessment
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yes (1.00)
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yes (1.00)
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yes (1.00)
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yes (1.00)
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yes (1.00)
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yes (1.00)
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no (0.00)
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yes (1.00)
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yes (1.00)
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no (0.00)
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yes (1.00)
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yes (1.00)
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May 13, 2021
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COVID-19 CVD Registry
|
World Health Organisation COVID registries assessment
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yes (1.00)
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yes (1.00)
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yes (1.00)
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yes (1.00)
|
yes (1.00)
|
yes (1.00)
|
yes (1.00)
|
no (0.00)
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yes (1.00)
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no (0.00)
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no (0.00)
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yes (1.00)
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May 13, 2021
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COVID-HEP Registry
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World Health Organisation COVID registries assessment
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yes (1.00)
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yes (1.00)
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yes (1.00)
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no (0.00)
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no (0.00)
|
yes (1.00)
|
no (0.00)
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yes (1.00)
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yes (1.00)
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no (0.00)
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yes (1.00)
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yes (1.00)
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May 13, 2021
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COVID-19 Dermatology registry
|
World Health Organisation COVID registries assessment
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yes (1.00)
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yes (1.00)
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yes (1.00)
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nobut (0.25)
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nobut (0.25)
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yes (1.00)
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no (0.00)
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yes (1.00)
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yes (1.00)
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no (0.00)
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no (0.00)
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yes (1.00)
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May 13, 2021
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Discovery VIRUS COVID-19
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World Health Organisation COVID registries assessment
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yes (1.00)
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yes (1.00)
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yes (1.00)
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yes (1.00)
|
yes (1.00)
|
yes (1.00)
|
no (0.00)
|
yes (1.00)
|
yes (1.00)
|
no (0.00)
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no (0.00)
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yes (1.00)
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May 13, 2021
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Extracorporeal Life Support Organization Registry
|
World Health Organisation COVID registries assessment
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yes (1.00)
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yes (1.00)
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yes (1.00)
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yes (1.00)
|
yes (1.00)
|
yes (1.00)
|
no (0.00)
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yes (1.00)
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yes (1.00)
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nobut (0.25)
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no (0.00)
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yes (1.00)
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May 13, 2021
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Pregnancy CoRonavIrus Outcomes RegIsTrY
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World Health Organisation COVID registries assessment
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yes (1.00)
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yes (1.00)
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yes (1.00)
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yes (1.00)
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no (0.00)
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yes (1.00)
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no (0.00)
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yes (1.00)
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yes (1.00)
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no (0.00)
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yes (1.00)
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yes (1.00)
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May 13, 2021
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COVID-19 Global Rheumatology Alliance
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World Health Organisation COVID registries assessment
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yes (1.00)
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yes (1.00)
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yes (1.00)
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nobut (0.25)
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no (0.00)
|
yes (1.00)
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yesbut (0.75)
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yes (1.00)
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yes (1.00)
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no (0.00)
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no (0.00)
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yes (1.00)
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May 13, 2021
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SECURE-Cirrhosis Registry
|
World Health Organisation COVID registries assessment
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no (0.00)
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yes (1.00)
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yes (1.00)
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no (0.00)
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no (0.00)
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yes (1.00)
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yesbut (0.75)
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yes (1.00)
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yes (1.00)
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no (0.00)
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nobut (0.25)
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yes (1.00)
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May 13, 2021
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The American Society for Hematology Research Collaborative COVID-19 Registry for Hematologic Malignancy
|
World Health Organisation COVID registries assessment
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yes (1.00)
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yes (1.00)
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yes (1.00)
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yesbut (0.75)
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no (0.00)
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yes (1.00)
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yesbut (0.75)
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yes (1.00)
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yes (1.00)
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no (0.00)
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no (0.00)
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yes (1.00)
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May 13, 2021
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Coronavirus and MS Reporting Database
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World Health Organisation COVID registries assessment
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yes (1.00)
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yes (1.00)
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yes (1.00)
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nobut (0.25)
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no (0.00)
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yes (1.00)
|
no (0.00)
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yes (1.00)
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yes (1.00)
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no (0.00)
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no (0.00)
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yes (1.00)
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May 13, 2021
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HIV and COVID-19 Registry in Europe
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World Health Organisation COVID registries assessment
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yes (1.00)
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yes (1.00)
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yes (1.00)
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no (0.00)
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no (0.00)
|
yes (1.00)
|
no (0.00)
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yes (1.00)
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yesbut (0.75)
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no (0.00)
|
no (0.00)
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yes (1.00)
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May 13, 2021
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Coronavirus and Celiac Disease Reporting Database
|
World Health Organisation COVID registries assessment
|
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yes (1.00)
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yes (1.00)
|
yes (1.00)
|
no (0.00)
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nobut (0.25)
|
yes (1.00)
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yesbut (0.75)
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yes (1.00)
|
yes (1.00)
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no (0.00)
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nobut (0.25)
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yes (1.00)
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May 13, 2021
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Coronavirus and Psoriasis Reporting Registry
|
World Health Organisation COVID registries assessment
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yes (1.00)
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yes (1.00)
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yes (1.00)
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no (0.00)
|
no (0.00)
|
yes (1.00)
|
no (0.00)
|
yes (1.00)
|
yes (1.00)
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no (0.00)
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no (0.00)
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yes (1.00)
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May 13, 2021
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SECURE-Sickle Cell Disease Registry
|
World Health Organisation COVID registries assessment
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yes (1.00)
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yes (1.00)
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yes (1.00)
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nobut (0.25)
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no (0.00)
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yes (1.00)
|
no (0.00)
|
yes (1.00)
|
yes (1.00)
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no (0.00)
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no (0.00)
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yes (1.00)
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May 13, 2021
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Coronavirus and Atopic Dermatitis (AD) / Alopecia Reporting Database
|
World Health Organisation COVID registries assessment
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yes (1.00)
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yes (1.00)
|
yes (1.00)
|
no (0.00)
|
no (0.00)
|
yes (1.00)
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yesbut (0.75)
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yes (1.00)
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yes (1.00)
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no (0.00)
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no (0.00)
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yes (1.00)
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May 13, 2021
|
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MS Global Data-Sharing Initiative
|
World Health Organisation COVID registries assessment
|
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yes (1.00)
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yes (1.00)
|
yes (1.00)
|
yes (1.00)
|
no (0.00)
|
yes (1.00)
|
no (0.00)
|
yesbut (0.75)
|
yes (1.00)
|
no (0.00)
|
no (0.00)
|
yes (1.00)
|
May 13, 2021
|
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European Renal Association COVID-19 Database
|
World Health Organisation COVID registries assessment
|
|
yes (1.00)
|
yes (1.00)
|
yes (1.00)
|
no (0.00)
|
yes (1.00)
|
nobut (0.25)
|
no (0.00)
|
yes (1.00)
|
yes (1.00)
|
no (0.00)
|
no (0.00)
|
yes (1.00)
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May 13, 2021
|
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China National GeneBank DataBase
|
World Health Organisation COVID registries assessment
|
|
yes (1.00)
|
yes (1.00)
|
yes (1.00)
|
yes (1.00)
|
yesbut (0.75)
|
yes (1.00)
|
nobut (0.25)
|
yes (1.00)
|
yes (1.00)
|
no (0.00)
|
nobut (0.25)
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yesbut (0.75)
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Jun 9, 2021
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The European Genome-phenome Archive
|
World Health Organisation COVID registries assessment
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Jun 9, 2021
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