European Porphyria Registry (EPR)

The EPR aims primarily to investigate the natural history, efficacy of treatment regimens and actual clinical practice for people with porphyria across Europe. It also aims to improve quality of care and serve research.

EPR participants were recruited by European porphyria expert centres in the International​ Porphyria Network (Ipnet, former Epnet). Participants were recruited when their diagnosis was established (symptomatic or as part of predictive testing), for treatment and for follow-up.

 

Data for AIP patients were collected until 2019 during regular and emergency visits to the hospital or primary health care. The registry recorded data such as sex/gender, date of birth, porphyria diagnosis, laboratory test results, symptoms and treatment. Physicians were able to enter consecutive visits for the same participant.

Participants in the registry are not identified but are registered with a personal pseudonym (code), so only the treating physician at the local porphyria centre entering the data knows the identity of the participant.

 

The registry is located at Haukeland University Hospital, Bergen, and originally has a license from the Norwegian Data Inspectorate in accordance with the EU Data Protection Directive (reference no. 12/00657-3/1UR). From 20.07.2018 the registry is operated in accordance with the new Norwegian Personal Data Act and the EU General Data Protection Regulation (GDPR).

 

All porphyria centres of expertise are required to obtain national and/or local ethical committee approval for inclusion into the registry. 

 

Publication 

Multicentre data from the EPR was published spring 2026; Baravelli C et al. Clinical Characteristics and Outcomes of Acute Intermittent Porphyria: Insights From the European Porphyria Registry.  

The development of the EPR has been funded by Napos, Bergen, Norway and the EU Directorate General for Health & Consumers (DG SANCO), Brussels, Belgium. 

Contact information 

Phone: +47 55973170, email: epr@helse-bergen.no.