PORPHYRIA REGISTRY

The European Porphyria Registry (EPR) is a multi-centre, international, observational prospective cohort study to include all porphyrias. As a first step, the EPR is developed for patients with acute intermittent porphyria (AIP), but will with time be expanded to include all porphyrias... For a more detailed explanation of the EPR and for those with access, please see the ‘EPR Protocol Synopsis' available from the home page... The EPR aims primarily to conduct an investigation of 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.