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828 : EXPLORE: A Prospective, Multinational Natural History Study of Patients with Acute Hepatic Porphyria (AHP) with Recurrent Attacks

Researchers

Presenter

  • Laurent Gouya

Principal Investigators

  • Manisha Balwani

  • D Montgomery Bissell

  • David Rees

  • Ulrich Stolzel

  • John Phillips

  • Raili Kaupinnen

  • Janneke Langendonk

  • Robert J. Desnick

  • Jean Charles Deybach

  • Herbert L. Bonkovsky

  • Charles Parker

  • Hetanshi Naik

  • Michael Badminton

  • Penny Stein

  • Elizabeth Minder

  • Jerzy Windyga

  • Pavel Martasek

  • Maria Cappellini

  • Paolo Ventura

  • Eliane Sardh

  • Pauline Harper

  • Johan K. Sandberg

  • Aasne K. Aarsand

  • Felix Alegre

  • Aneta Ivanova

  • Amy Chan

  • Chang-Hoek Soh

  • Kirsten McCarthy

  • William Querbes

  • Craig penz

  • Amy Simon

  • Karl E. Anderson

Medical Centers

  • Centre Francais des Porphyries, Paris, France

  • University of Alabama, Birmingham, AL

  • Mount Sinai School of Medicine, New York, NY

  • The University of Texas Medical Branch, Galveston, TX

  • University of California, San Francisco, CA

  • Kings College London, London, United Kingdom

  • Klinikum Chemnitz, Chemnitz, Germany

  • University of Utah, Salt Lake City, UT

  • University of Helsinki, H, Finland

  • Erasmus University Medical Center, Rotterdam, Netherlands

  • Wake Forest University, Winston-Salem, NC

  • University Hospital of North Tees, , United Kingdom

  • Stadtspital Triemli, Zentrallabor, Switzerland

  • Instytut Hematologii i Transfuzjologii, Warszawa, Poland

  • Univerzita Karlova v Praze, Prague, Czech Republic

  • University of Milan, Milan, Italy

  • Nephrology, Università degli Studi di Modena e Reggio Emilia, Modena, Italy

  • Karolinska University Hospital, Stockholm, Sweden

  • Norwegian Porphyria Centre, Bergen, Norway

  • Clinica Universidad de Navarra, Pamplona, Spain

  • St. Ivan Rilski University Hospital, Sofia, Bulgaria

  • Alnylam, Cambridge, MA

Locations

  • France

  • United States

  • United Kingdom

  • Germany

  • Finland

  • Netherlands

  • Switzerland

  • Poland

  • Czech Republic

  • Italy

  • Sweden

  • Norway

  • Spain

  • Bulgaria

Companies

  • N/A

Study Components

Therapeutic Area

  • Genetic Disorder

Disease

  • Acute hepatic porphyria

Biomarkers

  • N/A

Drug/Treatment

  • Porphyrin

Outcome

  • N/A

Study Design

  • Observational

  • Multinational

  • Prospective

Phase

  • NA

Study Id's

  • N/A

Sponsors

  • N/A

Result

  • N/A

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