ERN RARE-LIVER prospective research registry

First published 01/02/2024

Last updated 17/10/2024

Data source

Human

Disease registry

Other

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Administrative details

Data source ID: 40246

Name of data source: ERN RARE-LIVER prospective research registry

Data source acronym: R-LIVER rare liver disease registry

Data holder: University Medical Centre Hamburg-Eppendorf

Data source type: Disease registry
Other

Data source type, other: Prospective studies database

Main financial support: European public funding

Care setting: Hospital inpatient care
Hospital outpatient care
Primary care – specialist level (e.g. paediatricians)
Secondary care – specialist level (ambulatory)

Data source qualification If the data source has successfully undergone a formal qualification process (e.g., from the EMA, ISO or other certifications), this should be described.: No

Data source website: https://rare-liver.eu/registry

Contact details

Christoph Schramm ERN.RareLiver@uke.de

Main

ERN.RareLiver@uke.de

Data source regions and languages

Data source countries: Argentina
Belgium
Canada
Czechia
Denmark
Germany
Greece
Hungary
Israel
Italy
Lithuania
Netherlands
Poland
Slovakia
Spain
Switzerland
United Kingdom

Data source languages: English

Data source establishment

Data source established: 15/06/2018

Data source time span: First collection: 01/05/2017
The date when data started to be collected or extracted.