ESTABLISHMENT OF A NATIONAL REGISTER OF PORPHYRIA PATIENTS - CAN IT BE EXTENDED TO A EUROPEAN REGISTER?

Stole E., Aarsand A.K., Skadberg O., Tollali , Brun A. , Sandberg S.

 

The Norwegian Porphyria Centre, Laboratory of Clinical Biochemistry, Haukeland University Hospital, Bergen, Norway

 

 

The Norwegian Porphyria Centre (NAPOS) established a national register of patients with porphyria in 2002. The main object of the register is research, but it will also serve as an important link between the patients and the Porphyria Centre, for example in prophylaxis or treatment of individual patients. Data collection is based on standardised questionnaires filled in by the patients, who also have to sign an informed consent in order to be registered. The questionnaire includes personal data and questions concerning diagnosis, symptoms, treatment, medication, other health information, living habits, disease-related problems, quality of life, and family information. The data from all questionnaires are stored in a Microsoft Access computer database. Patients also receive a personal porphyria ID card along with the questionnaire. The card contains a brief description of the disease, in both Norwegian and English. We have recently extended our register permission from the Norwegian Data Inspectorate to also include patients from other Nordic countries. In co-operation with the Danish Porphyria Centre, Danish patients will soon be included in the database. We propose that the next step could be to establish a European porphyria register. The main advantage of a common European database would be the possibility to gather a larger amount of data for epidemiological studies. A European porphyria register would also fit well within the primary objective of the European Porphyria Initiative (EPI), which is to compare experience between countries, attempt to develop a common approach to the management of these diseases and to facilitate international collaborative clinical research and development. Porphyria centres or countries are encouraged to take contact to participate in this international co-operation.