Quantifying the impact of symptomatic acute hepatic porphyria on well‐being via patient‐reported outcomes: Results from the Porphyria Worldwide Patient Experience Research ( <scp>POWER</scp> ) study-Reference-Cited by-同舟云学术

Quantifying the impact of symptomatic acute hepatic porphyria on well‐being via patient‐reported outcomes: Results from the Porphyria Worldwide Patient Experience Research ( POWER ) study

Published:2022-10-18 Issue:1 Volume:64 Page:104-113
ISSN:2192-8312
Container-title:JIMD Reports
language:en
Short-container-title:JIMD Reports

Author:

Dickey Amy¹^ORCID,Wheeden Kristen²,Lyon Desiree²,Burrell Sue³,Hegarty Sean³,Falchetto Rocco⁴,Williams Edrin R.²,Barman‐Aksözen Jasmin⁴⁵^ORCID,DeCongelio Marc⁶,Bulkley Alison⁶,Matos Joana E.⁷,Mnif Tarek⁸,Mora Jordanna⁹,Ko John J.⁹,Meninger Stephen⁹,Lombardelli Stephen¹⁰,Nance Danielle¹¹

Affiliation:

1. Division of Pulmonary and Critical Care Medicine, Department of Medicine Massachusetts General Hospital Boston Massachusetts USA

2. American Porphyria Foundation Bethesda Maryland USA

3. Global Porphyria Advocacy Coalition Durham City UK

4. Swiss Society for Porphyria Zürich Switzerland

5. Institute of Laboratory Medicine, Department of Medical Institutes Stadtspital Zürich, Triemli Zürich Switzerland

6. Cerner Enviza (formerly Kantar Health) New York New York USA

7. Cerner Enviza (formerly Kantar Health) Kansas City Missouri USA

8. Cerner Enviza (formerly Kantar Health) Paris France

9. Alnylam Pharmaceuticals Cambridge Massachusetts USA

10. Alnylam Pharmaceuticals Maidenhead UK

11. Banner Health Gilbert Arizona USA