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SECURE-Cirrhosis Registry

General Information

SECURE-Cirrhosis Registry is a secure, online, de-identified Personal Health Identifier (PHI)-free reporting registry for patients with chronic liver disease and post-liver transplantation

Homepage https://covidcirrhosis.web.unc.edu/

Countries that developed this resource United States

Created in 2020

Taxonomic range

Homo sapiens

SARS-CoV-2

Knowledge Domains

Subjects

User-defined Tags

How to cite this record FAIRsharing.org: SECURE-Cirrhosis Registry; SECURE-Cirrhosis Registry; DOI: https://doi.org/10.25504/FAIRsharing.YlASKr; Last edited: May 20, 2021, 1:46 p.m.; Last accessed: Nov 28 2021 3:06 a.m.

Record added: Dec. 16, 2020, 2:33 p.m.
Record updated: May 13, 2021, 4:02 p.m. by The FAIRsharing Team.

Show edit history

Edits to 'https://fairsharing.org/FAIRsharing.YlASKr' by 'The FAIRsharing Team' at 16:02, 13 May 2021 (approved):

	'supportLinks' has been modified:
		Before:
			FAQ|https://covidcirrhosis.web.unc.edu/faq/
			email|Andrew.Moon@unchealth.unc.edu
			online documentation|https://covidcirrhosis.web.unc.edu/acknowledgements/
		After:
			FAQ|https://covidcirrhosis.web.unc.edu/faq/
			email|Andrew.Moon@unchealth.unc.edu
			online documentation|https://covidcirrhosis.web.unc.edu/acknowledgements/
			online documentation|https://global.redcap.unc.edu/surveys/?s=E97LLA8WN8
			online documentation|https://covidcirrhosis.web.unc.edu/files/2020/03/SECURE-CIRRHOSIS_Case-Report-Form_3-24-20.pdf
		Added:
			online documentation|https://global.redcap.unc.edu/surveys/?s=E97LLA8WN8
			online documentation|https://covidcirrhosis.web.unc.edu/files/2020/03/SECURE-CIRRHOSIS_Case-Report-Form_3-24-20.pdf
		Removed:

	'dataProcesses' has been modified:
		Before:
			Updates and data, data access, https://covidcirrhosis.web.unc.edu/updates-and-data/
			Report a case (REDCap), data curation, https://global.redcap.unc.edu/surveys/?s=E97LLA8WN8
			Case report form, data curation, https://covidcirrhosis.web.unc.edu/files/2020/03/SECURE-CIRRHOSIS_Case-Report-Form_3-24-20.pdf
		After:
			Updates and data, data access, https://covidcirrhosis.web.unc.edu/updates-and-data/
		Added:
		Removed:
			Report a case (REDCap), data curation, https://global.redcap.unc.edu/surveys/?s=E97LLA8WN8
			Case report form, data curation, https://covidcirrhosis.web.unc.edu/files/2020/03/SECURE-CIRRHOSIS_Case-Report-Form_3-24-20.pdf

Edits to 'https://fairsharing.org/FAIRsharing.YlASKr' by 'The FAIRsharing Team' at 11:47, 12 May 2021 (approved):

	'onto_disciplines' has been modified:
		Before:
			Critical Care Medicine
			Gastroenterology
			Health Science
			Infectious Disease Medicine
			Medical Virology
		After:
			Critical Care Medicine
			Epidemiology
			Gastroenterology
			Health Science
			Infectious Disease Medicine
			Medical Virology
		Added:
			Epidemiology
		Removed:

Edits to 'https://fairsharing.org/FAIRsharing.YlASKr' by 'The FAIRsharing Team' at 11:46, 12 May 2021 (approved):

	'supportLinks' has been modified:
		Before:
			FAQ|https://covidcirrhosis.web.unc.edu/faq/
		After:
			FAQ|https://covidcirrhosis.web.unc.edu/faq/
			email|Andrew.Moon@unchealth.unc.edu
			online documentation|https://covidcirrhosis.web.unc.edu/acknowledgements/
		Added:
			email|Andrew.Moon@unchealth.unc.edu
			online documentation|https://covidcirrhosis.web.unc.edu/acknowledgements/
		Removed:

	'miriam_id' has been modified:
		Before: None
		After: 

	'dataProcesses' has been modified:
		Before:
			Updates and data, data access, https://covidcirrhosis.web.unc.edu/updates-and-data/
			Report a case (REDCap), data curation, https://global.redcap.unc.edu/surveys/?s=E97LLA8WN8
		After:
			Updates and data, data access, https://covidcirrhosis.web.unc.edu/updates-and-data/
			Report a case (REDCap), data curation, https://global.redcap.unc.edu/surveys/?s=E97LLA8WN8
			Case report form, data curation, https://covidcirrhosis.web.unc.edu/files/2020/03/SECURE-CIRRHOSIS_Case-Report-Form_3-24-20.pdf
		Added:
			Case report form, data curation, https://covidcirrhosis.web.unc.edu/files/2020/03/SECURE-CIRRHOSIS_Case-Report-Form_3-24-20.pdf
		Removed:

	'onto_domains' has been modified:
		Before:
			Patient Care
			liver disease
			report
		After:
			Patient Care
			Report
			liver disease
			report
		Added:
			Report
		Removed:

Edits to 'https://fairsharing.org/FAIRsharing.YlASKr' by 'The FAIRsharing Team' at 16:08, 04 Feb 2021 (approved):

	'doi' has been modified:
		Before: None
		After: 

	'miriam_id' has been modified:
		Before: 
		After: None

	'onto_domains' has been modified:
		Before:
			Patient Care
			Report
			liver disease
			report
		After:
			Patient Care
			liver disease
			report
		Added:
		Removed:
			Report

Edits to 'https://fairsharing.org/FAIRsharing.YlASKr' by 'The FAIRsharing Team' at 14:39, 16 Dec 2020 (approved):

	'dataProcesses' has been modified:
		Before:
			Updates and data, data access, https://covidcirrhosis.web.unc.edu/updates-and-data/
			Report a case (REDCap), data access, https://global.redcap.unc.edu/surveys/?s=E97LLA8WN8
		After:
			Updates and data, data access, https://covidcirrhosis.web.unc.edu/updates-and-data/
			Report a case (REDCap), data curation, https://global.redcap.unc.edu/surveys/?s=E97LLA8WN8
		Added:
			Report a case (REDCap), data curation, https://global.redcap.unc.edu/surveys/?s=E97LLA8WN8
		Removed:
			Report a case (REDCap), data access, https://global.redcap.unc.edu/surveys/?s=E97LLA8WN8

Edits to 'https://fairsharing.org/FAIRsharing.YlASKr' by 'The FAIRsharing Team' at 14:37, 16 Dec 2020 (approved):

	'dataProcesses' has been modified:
		Before:
			Updates and data, data access, https://covidcirrhosis.web.unc.edu/updates-and-data/
			Report a case, data access, https://global.redcap.unc.edu/surveys/?s=E97LLA8WN8
		After:
			Updates and data, data access, https://covidcirrhosis.web.unc.edu/updates-and-data/
			Report a case (REDCap), data access, https://global.redcap.unc.edu/surveys/?s=E97LLA8WN8
		Added:
			Report a case (REDCap), data access, https://global.redcap.unc.edu/surveys/?s=E97LLA8WN8
		Removed:
			Report a case, data access, https://global.redcap.unc.edu/surveys/?s=E97LLA8WN8

In Collections

TDR COVID-19 Participant-level data sharing platforms & registries

COVID-19 Resources

Support

General

FAQ	https://covidcirrhosis.web.unc.edu/faq/
support email	Andrew Moon
online documentation	List of participating centers
online documentation	Report a case (REDCap)
online documentation	Case report form

Additional Information

Contact

General contact

Tools

No tools defined

Access / Retrieve Data

Conditions of Use

Data Access

Updates and data

https://covidcirrhosis.web.unc.edu/updates-and-data/

Publications

Outcomes following SARS-CoV-2 infection in patients with chronic liver disease: an international registry study.

Marjot et al.
J Hepatol 2020

View Paper (PubMed) View Publication

Outcomes following SARS-CoV-2 infection in liver transplant recipients: an international registry study.

Webb GJ,Marjot T,Cook JA,Aloman C,Armstrong MJ,Brenner EJ,Catana MA,Cargill T,Dhanasekaran R,Garcia-Juarez I,Hagstrom H,Kennedy JM,Marshall A,Masson S,Mercer CJ,Perumalswami PV,Ruiz I,Thaker S,Ufere NN,Barnes E,Barritt AS 4th,Moon AM
Lancet Gastroenterol Hepatol 2020

View Paper (PubMed) View Publication

Related Standards

Reporting Guidelines

No guidelines defined

Terminology Artifacts

No semantic standards defined

Models and Formats

No syntax standards defined

Identifier Schemas

No identifier schema standards defined

Metrics

No metrics standards defined

Related Databases

COVID-HEP Registry

Implementing Policies

This record is not implemented by any policy.

Credit

Record Maintainer

This record is in need of a maintainer. If you login, you'll be able to claim this record.

Undefined

American Association for the Study of Liver Diseases (AASLD), Alexandria, VA, USA (Consortium)
Chinese Portal Hypertension Diagnosis and Monitoring Study Group (CHESS) (Consortium)
International Liver Cancer Association (ILCA), Brussels, Belgium (Consortium)

SECURE-Cirrhosis Registry

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