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Clinical Characteristics and Outcomes of Acute Intermittent Porphyria: Insights From the European Porphyria Registry.

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Title: Clinical Characteristics and Outcomes of Acute Intermittent Porphyria: Insights From the European Porphyria Registry.
Authors: Baravelli CM; Norwegian Porphyria Centre (NAPOS), Department of Medical Biochemistry and Pharmacology, Haukeland University Hospital, Bergen, Norway.; Department of Disease Burden, Norwegian Institute of Public Health, Bergen, Norway., Sandberg S; Norwegian Porphyria Centre (NAPOS), Department of Medical Biochemistry and Pharmacology, Haukeland University Hospital, Bergen, Norway.; Norwegian Organization for Quality Improvement of Laboratory Examinations, Haraldsplass Deaconess Hospital, Bergen, Norway.; Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway., Hammersland MH; Norwegian Porphyria Centre (NAPOS), Department of Medical Biochemistry and Pharmacology, Haukeland University Hospital, Bergen, Norway., Harper P; Department of Medical Biochemistry and Biophysics, Centre for Inherited Metabolic Diseases, Porphyria Centre Sweden, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden., Badminton MN; School of Medicine, Cardiff University, Cardiff, UK., Aguilera P; Department of Dermatology, Hospital Clinic de Barcelona, University of Barcelona, Barcelona, Spain.; Centro de Investigaciones en Red en Enfermedades Raras, CIBER-Er, Madrid, Spain., Cassiman D; Department of Gastroenterology-Hepatology and Metabolic Center, University Hospitals Leuven, Belgium., Deybach JC; Assistance Publique-Hôpitaux de Paris, Centre Français Des Porphyries, Hôpital Louis Mourier, Colombes and INSERM UMR1134, Université Paris Cité, Paris, France., Di Pierro E; Medicine and Metabolic Diseases Unit, Fondazione IRCCS ca' Granda Ospedale Maggiore Policlinico, Milan, Italy., Graziadei G; Medicine and Metabolic Diseases Unit, Fondazione IRCCS ca' Granda Ospedale Maggiore Policlinico, Milan, Italy., Langendonk JG; Center for Lysosomal and Metabolic Disease, Porphyria Expertise Center Rotterdam, Department of Internal Medicine, Erasmus MC, University Medical Center, Rotterdam, the Netherlands., Marcacci M; Department of Medical and Surgical Sciences for Children and Adults, Internal Medicine Unit, University Hospital of Modena, University of Modena and Reggio Emilia, Modena, Italy., Sardh E; Department of Molecular Medicine and Surgery, Centre for Inherited Metabolic Diseases, Porphyria Centre Sweden, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden., Schmitt C; Assistance Publique-Hôpitaux de Paris, Centre Français Des Porphyries, Hôpital Louis Mourier, Colombes and INSERM UMR1134, Université Paris Cité, Paris, France., To-Figueras J; Department of Dermatology, Hospital Clinic de Barcelona, University of Barcelona, Barcelona, Spain., Ventura P; Department of Medical and Surgical Sciences for Children and Adults, Internal Medicine Unit, University Hospital of Modena, University of Modena and Reggio Emilia, Modena, Italy., Aarsand AK; Norwegian Porphyria Centre (NAPOS), Department of Medical Biochemistry and Pharmacology, Haukeland University Hospital, Bergen, Norway.; Norwegian Organization for Quality Improvement of Laboratory Examinations, Haraldsplass Deaconess Hospital, Bergen, Norway.
Source: Liver international : official journal of the International Association for the Study of the Liver [Liver Int] 2026 May; Vol. 46 (5), pp. e70615.
Publication Type: Journal Article; Multicenter Study
Journal Info: Publisher: Wiley-Blackwell Country of Publication: United States NLM ID: 101160857 Publication Model: Print Cited Medium: Internet ISSN: 1478-3231 (Electronic) Linking ISSN: 14783223 NLM ISO Abbreviation: Liver Int Subsets: MEDLINE
Database: MEDLINE Ultimate
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  Data: <searchLink fieldCode="AU" term="%22Baravelli+CM%22">Baravelli CM</searchLink>; Norwegian Porphyria Centre (NAPOS), Department of Medical Biochemistry and Pharmacology, Haukeland University Hospital, Bergen, Norway.; Department of Disease Burden, Norwegian Institute of Public Health, Bergen, Norway.<br /><searchLink fieldCode="AU" term="%22Sandberg+S%22">Sandberg S</searchLink>; Norwegian Porphyria Centre (NAPOS), Department of Medical Biochemistry and Pharmacology, Haukeland University Hospital, Bergen, Norway.; Norwegian Organization for Quality Improvement of Laboratory Examinations, Haraldsplass Deaconess Hospital, Bergen, Norway.; Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway.<br /><searchLink fieldCode="AU" term="%22Hammersland+MH%22">Hammersland MH</searchLink>; Norwegian Porphyria Centre (NAPOS), Department of Medical Biochemistry and Pharmacology, Haukeland University Hospital, Bergen, Norway.<br /><searchLink fieldCode="AU" term="%22Harper+P%22">Harper P</searchLink>; Department of Medical Biochemistry and Biophysics, Centre for Inherited Metabolic Diseases, Porphyria Centre Sweden, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden.<br /><searchLink fieldCode="AU" term="%22Badminton+MN%22">Badminton MN</searchLink>; School of Medicine, Cardiff University, Cardiff, UK.<br /><searchLink fieldCode="AU" term="%22Aguilera+P%22">Aguilera P</searchLink>; Department of Dermatology, Hospital Clinic de Barcelona, University of Barcelona, Barcelona, Spain.; Centro de Investigaciones en Red en Enfermedades Raras, CIBER-Er, Madrid, Spain.<br /><searchLink fieldCode="AU" term="%22Cassiman+D%22">Cassiman D</searchLink>; Department of Gastroenterology-Hepatology and Metabolic Center, University Hospitals Leuven, Belgium.<br /><searchLink fieldCode="AU" term="%22Deybach+JC%22">Deybach JC</searchLink>; Assistance Publique-Hôpitaux de Paris, Centre Français Des Porphyries, Hôpital Louis Mourier, Colombes and INSERM UMR1134, Université Paris Cité, Paris, France.<br /><searchLink fieldCode="AU" term="%22Di+Pierro+E%22">Di Pierro E</searchLink>; Medicine and Metabolic Diseases Unit, Fondazione IRCCS ca' Granda Ospedale Maggiore Policlinico, Milan, Italy.<br /><searchLink fieldCode="AU" term="%22Graziadei+G%22">Graziadei G</searchLink>; Medicine and Metabolic Diseases Unit, Fondazione IRCCS ca' Granda Ospedale Maggiore Policlinico, Milan, Italy.<br /><searchLink fieldCode="AU" term="%22Langendonk+JG%22">Langendonk JG</searchLink>; Center for Lysosomal and Metabolic Disease, Porphyria Expertise Center Rotterdam, Department of Internal Medicine, Erasmus MC, University Medical Center, Rotterdam, the Netherlands.<br /><searchLink fieldCode="AU" term="%22Marcacci+M%22">Marcacci M</searchLink>; Department of Medical and Surgical Sciences for Children and Adults, Internal Medicine Unit, University Hospital of Modena, University of Modena and Reggio Emilia, Modena, Italy.<br /><searchLink fieldCode="AU" term="%22Sardh+E%22">Sardh E</searchLink>; Department of Molecular Medicine and Surgery, Centre for Inherited Metabolic Diseases, Porphyria Centre Sweden, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden.<br /><searchLink fieldCode="AU" term="%22Schmitt+C%22">Schmitt C</searchLink>; Assistance Publique-Hôpitaux de Paris, Centre Français Des Porphyries, Hôpital Louis Mourier, Colombes and INSERM UMR1134, Université Paris Cité, Paris, France.<br /><searchLink fieldCode="AU" term="%22To-Figueras+J%22">To-Figueras J</searchLink>; Department of Dermatology, Hospital Clinic de Barcelona, University of Barcelona, Barcelona, Spain.<br /><searchLink fieldCode="AU" term="%22Ventura+P%22">Ventura P</searchLink>; Department of Medical and Surgical Sciences for Children and Adults, Internal Medicine Unit, University Hospital of Modena, University of Modena and Reggio Emilia, Modena, Italy.<br /><searchLink fieldCode="AU" term="%22Aarsand+AK%22">Aarsand AK</searchLink>; Norwegian Porphyria Centre (NAPOS), Department of Medical Biochemistry and Pharmacology, Haukeland University Hospital, Bergen, Norway.; Norwegian Organization for Quality Improvement of Laboratory Examinations, Haraldsplass Deaconess Hospital, Bergen, Norway.
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