Long-term clinical and socioeconomic consequences of porphyria
The project is registry based and thus uses data that has already been collected. Many of these registries have used user participation in their planning. The results from our research findings have been communicated to persons with porphyria via the Norwegian Porphyria Centre (NAPOS). NAPOS cooperates with the porphyria patient organisation (Norsk Porfyriforening). After publication in international peer reviewed scientific journals, the results are presented to people with porphyria through electronic news alerts, the Norwegian Porphyria Registry’s annual newsletter, which is sent by post, and in patient meetings. The Norwegian Porphyria Registry has a “fagråd” with representatives from the patient organisations. The results will also be communicated with patients via yearly patient course.
Acute hepatic porphyria and cancer risk: a nationwide cohort study.
J Intern Med 2017 Sep;282(3):229-240. Epub 2017 jul 20
PMID: 28730628 - Inngår i doktorgradsavhandlingen