The information provided on this website partly arises from the drug data collection within the EPNET project which has received funding from the European Union, in the framework of the Public Health Programme.

European Porphyria Network (EPNET)

The European Porphyria Network (EPNET) is a health information priority for developing strategies and mechanisms for preventing, exchanging information on and responding to non-communicable disease threats, including rare diseases. EPNET is a project arising from the European Porphyria Intiative (EPI) (www.porphyria-europe.org) funded by the INSERM.

EPNET and information about safe drugs

The aim of the EPNET project is to set up a functional network of specialist porphyria centres in Europe to provide better healthcare for porphyria patients and their families. One of the four strategic objectives of EPNET is to improve the quality of information about safe and unsafe drugs available to patients with an acute porphyria in order to reduce the overall frequency of acute attacks in response to medications. This will be achieved by:

  • Strengthening the data underlying the porphyrinogenic classification of drugs by systematically collecting reliable clinical experience
  • Disseminating this improved information to all EU countries by developing national pharmacopeia-specific drug databases for about 80% of the EU population.

Increased number of clinical drug reports

In the EPNET project the collaborating network of specialist porphyria centres is used to increase the number of clinical drug reports. At four centres (Cardiff in the UK, Paris in France, Warsaw in Poland, and Bergen in Norway) follow-up information on whether a drug has precipitated an attack or was used uneventfully is collected by pharmacists. The intention is to collect 4000 such drug reports during the EPNET project (2007-2010). An increased number of reliable clinical information collected in this project will strengthen the data underlying the porphyrinogenic classification of drugs and the reports will be implemented in the drug monographs of this database. The EPNET project intends to increase the number of drugs being safety classified in the database from 1.000 to 1.300.

The Nordic drug database
Originally this drug database was built primarily to aid healthcare professionals and patients in the Nordic countries. However, it is obviously an invaluable source for all countries if it is translated and country specific brand names etc. are included. The UK (adapted to the National Formulary) version was launched in March, 2005. Since then, the drug database has been used world-wide and the hit counter has shown more than 200 users a day. The drugs working group within the European Porphyria Initiative (EPI) has decided to use the Nordic drug database as a platform for a European system for drug recommendations in acute porphyrias. This intention is fulfilled in the EPNET project.

Expansion to include 15 European countries

To widen the access to this drug database for patients and healthcare professionals in all EU countries, the database will during this project be expanded by establishing national versions for 15 European countries. By providing specific national versions of the drug database, using the country’s own language and with generic and brand names according to the national pharmacopoeia, this important information about safety of drugs will be easily accessible for over 80% of the EU population. The increased accessibility to evidenced-based drug information will make it easier for patients and physicians to avoid drugs which may precipitate an acute attack. It is therefore expected that the EPNET project will lead to a decline in the overall frequency of drug-induced acute attacks in European porphyric patients.

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