European Porphyria Registry

First published 01/02/2024

Last updated 17/10/2024

Data source

Human

Disease registry

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Administrative details

PURI: https://redirect.ema.europa.eu/resource/47557

Data source ID: 47557

Name of data source: European Porphyria Registry

Data source acronym: EPR

Data holder: Norwegian Porphyria Centre (NAPOS)

Data source type: Disease registry

Main financial support: European public funding
Funding by own institution

Care setting: Hospital inpatient care
Hospital outpatient care
Primary care – GP, community pharmacist level
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: http://www.porphyriaregistry.org/

Contact details

Aasne K. Aarsand

Main

porfyri@helse-bergen.no

Data source regions and languages

Data source countries: Belgium
France
Italy
Netherlands
Norway
Spain
Sweden
United Kingdom

Data source languages: English

Data source establishment

Data source established: 15/06/2012

Data source time span: First collection: 15/06/2012
The date when data started to be collected or extracted.

Publications

Data source publications

J.C. Deybach, S. Parker, M. Badminton, S. Sandberg. European Porphyria Network (EPNET) for information, epidemiological data, quality and equity of service. Orphanet J Rare Dis. 2010, 5(Suppl 1): P16.