Long-term clinical and socioeconomic consequences of porphyria
- Prosjektnummer
- 911937
- Ansvarlig person
- Carl Baravelli
- Institusjon
- Helse Bergen HF
- Prosjektkategori
- Doktorgradsstipend
- Helsekategori
- Cancer, Metabolic and Endocrine, Neurological, Renal and Urogenital
- Forskningsaktivitet
- 5. Treatment Developement
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.
Porphyria cutanea tarda increases risk of hepatocellular carcinoma and premature death: a nationwide cohort study.
Orphanet J Rare Dis 2019 04 03;14(1):77. Epub 2019 apr 3
PMID: 30944007 - Inngår i doktorgradsavhandlingen
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
Clinical long-term consequences of acute hepatic porphyria and porphyria cutanea tarda
- Disputert:
- desember 2019
- Hovedveileder:
- Sverre Sandberg
- Aasne Karine Aarsand Hovedveileder
- Mette Christophersen Tollånes Hovedveileder
- Sverre Sandberg Medveileder
- Carl Michael Baravelli Ph.d.-kandidat
eRapport er utarbeidet av Sølvi Lerfald og Reidar Thorstensen, Regionalt kompetansesenter for klinisk forskning, Helse Vest RHF, og videreutvikles av de fire RHF-ene i fellesskap, med støtte fra Helse Vest IKT
Alle henvendelser rettes til Faglig rapportering, Helse Vest