Erik Pomp *, Stig Thunell § and Atle Brun *

*Norwegian Porphyria Centre, Haukeland University Hospital, Bergen, Norway, §Porphyria Centre Sweden, Huddinge University Hospital, Stockholm, Sweden

Since certain drugs may precipitate attacks in acute porphyrias, it is essential to avoid prescribing them. Several porphyria drug lists containing very useful safety guidance, are available on the Internet, but for many drugs there are considerable discrepancies between the different lists and background information is usually lacking. In addition, most of the relatively new drugs on the market are not safety classified.

The Swedish and Norwegian national porphyria centres have evaluated the porphyria prescribing guidance. The evaluation has taken into account pharmacological traits as well as all retrievable published and unpublished clinical and experimental data concerning porphyrinogenicity. In a collaborative project, a comprehensive database containing the findings of this evaluation has been developed. Functionality and user-friendliness has been emphasised in the development of the drug database. Clinicians can easily use this database tool to quickly find the safest alternative. The system can also combine vulnerability data of the patient with the safety classification of the desired drug. Specific advice concerning follow up and possible prophylactic measures is then given.

In the Scandinavian countries, national versions of the database are either available on the web or being established. A drug working group in EPI (European Porphyria Initiative) has recently decided that this database shall be the platform for a European system. The aim is to establish national versions of the drug database in more European countries. The safety classification of the drugs is kept constant in the different national versions, but trade names and generic names vary and are adjusted to national needs. A preliminary UK version has recently been established. A practical demonstration of the use of this UK version will be given.