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EXPLORE: A Prospective, Multinational, Natural History Study of Patients with Acute Hepatic Porphyria with Recurrent Attacks.
Gouya, Laurent; Ventura, Paolo; Balwani, Manisha; Bissell, D Montgomery; Rees, David C; Stölzel, Ulrich; Phillips, John D; Kauppinen, Raili; Langendonk, Janneke G; Desnick, Robert J; Deybach, Jean-Charles; Bonkovsky, Herbert L; Parker, Charles; Naik, Hetanshi; Badminton, Michael; Stein, Penelope E; Minder, Elisabeth; Windyga, Jerzy; Bruha, Radan; Cappellini, Maria Domenica; Sardh, Eliane; Harper, Pauline; Sandberg, Sverre; Aarsand, Aasne K; Andersen, Janice; Alegre, Félix; Ivanova, Aneta; Talbi, Neila; Chan, Amy; Querbes, William; Ko, John; Penz, Craig; Liu, Shangbin; Lin, Tim; Simon, Amy; Anderson, Karl E.
Affiliation
  • Gouya L; Centre de Référence Maladies Rares Porphyries, Colombes, France.
  • Ventura P; University of Paris, Paris, France.
  • Balwani M; Laboratory of Excellence GR-Ex, Paris, France.
  • Bissell DM; Università degli Studi di Modena e Reggio Emilia, Emilia-Romagna, Italy.
  • Rees DC; Icahn School of Medicine at Mount Sinai, New York, NY.
  • Stölzel U; University of California, San Francisco, CA.
  • Phillips JD; King's College Hospital, King's College London, London, UK.
  • Kauppinen R; Klinikum Chemnitz Porphyria Center, Chemnitz, Germany.
  • Langendonk JG; University of Utah, Salt Lake City, UT.
  • Desnick RJ; University Hospital of Helsinki, Helsinki, Finland.
  • Deybach JC; Porphyria Center, Center for Lysosomal and Metabolic Disease, Department of Internal Medicine, Erasmus MC, University Medical Center Rotterdam, the Netherlands.
  • Bonkovsky HL; Icahn School of Medicine at Mount Sinai, New York, NY.
  • Parker C; Centre de Référence Maladies Rares Porphyries, Colombes, France.
  • Naik H; University of Paris, Paris, France.
  • Badminton M; Laboratory of Excellence GR-Ex, Paris, France.
  • Stein PE; Section on Gastroenterology & Hepatology, Wake Forest University/NC Baptist Medical Center, Winston-Salem, NC.
  • Minder E; University of Utah, Salt Lake City, UT.
  • Windyga J; Icahn School of Medicine at Mount Sinai, New York, NY.
  • Bruha R; University Hospital of Wales, Cardiff, UK.
  • Cappellini MD; King's College Hospital, King's College London, London, UK.
  • Sardh E; Stadtspital Triemli, Zentrallabor, Zurich, Switzerland.
  • Harper P; Department of Hemostatic Disorders and Internal Medicine, Institute of Hematology and Transfusion Medicine, Warsaw, Poland.
  • Sandberg S; 4th Internal Clinic, General University Hospital, Charles University, Prague, Czech Republic.
  • Aarsand AK; Fondazione IRCCS, Ca Granda, University of Milan, Milan, Italy.
  • Andersen J; Porphyria Centre Sweden, Centre for Inherited Metabolic Diseases, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden.
  • Alegre F; Porphyria Centre Sweden, Centre for Inherited Metabolic Diseases, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden.
  • Ivanova A; Norwegian Porphyria Centre, Haukeland University Hospital, Bergen, Norway.
  • Talbi N; Norwegian Porphyria Centre, Haukeland University Hospital, Bergen, Norway.
  • Chan A; Norwegian Porphyria Centre, Haukeland University Hospital, Bergen, Norway.
  • Querbes W; Clinica Universidad de Navarra, Navarra, Spain.
  • Ko J; St. Ivan Rilski U Hospital, Sofia, Bulgaria.
  • Penz C; Centre de Référence Maladies Rares Porphyries, Colombes, France.
  • Liu S; University of Paris, Paris, France.
  • Lin T; Laboratory of Excellence GR-Ex, Paris, France.
  • Simon A; Alnylam Pharmaceuticals, Cambridge, MA.
  • Anderson KE; Alnylam Pharmaceuticals, Cambridge, MA.
Hepatology ; 71(5): 1546-1558, 2020 05.
Article in En | MEDLINE | ID: mdl-31512765
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Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Porphyrias, Hepatic / Porphobilinogen Synthase Type of study: Observational_studies Limits: Adult / Aged / Female / Humans / Male / Middle aged Language: En Journal: Hepatology Year: 2020 Type: Article Affiliation country: France
Fulltext
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Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Porphyrias, Hepatic / Porphobilinogen Synthase Type of study: Observational_studies Limits: Adult / Aged / Female / Humans / Male / Middle aged Language: En Journal: Hepatology Year: 2020 Type: Article Affiliation country: France