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Patient Preference and Adherence Volume 14, 2020 - Issue
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Original Research

Assessing Preferences for Rare Disease Treatment: Qualitative Development of the Paroxysmal Nocturnal Hemoglobinuria Patient Preference Questionnaire (PNH-PPQ©)

Karen Kaiser1 Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USACorrespondence[email protected]
ORCID Iconhttps://orcid.org/0000-0002-6550-5240
ORCID Icon,
Susan E Yount1 Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USAORCID Iconhttps://orcid.org/0000-0003-2940-2073
ORCID Icon,
Christa E Martens1 Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
,
Kimberly A Webster1 Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USAORCID Iconhttps://orcid.org/0000-0003-1495-1459
ORCID Icon,
Sara Shaunfield1 Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
,
Amy Sparling1 Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
,
John Devin Peipert1 Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USAORCID Iconhttps://orcid.org/0000-0001-5762-7881
ORCID Icon,
David Cella1 Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
,
Scott T Rottinghaus2 Alexion Pharmaceuticals Inc, Boston, MA, USA
,
Bonnie M K Donato2 Alexion Pharmaceuticals Inc, Boston, MA, USAORCID Iconhttps://orcid.org/0000-0001-5099-2456
ORCID Icon,
Richard Wells3 Sunnybrook Health Sciences Centre, Toronto, ON, Canada
&
Ioannis Tomazos2 Alexion Pharmaceuticals Inc, Boston, MA, USA
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Pages 705-715 | Published online: 05 Apr 2020

Citations (4)

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Read on this site (1)

Bruno Fattizzo, Francesca Cavallaro, Esther Natalie Oliva & Wilma Barcellini. (2022) Managing Fatigue in Patients with Paroxysmal Nocturnal Hemoglobinuria: A Patient-Focused Perspective. Journal of Blood Medicine 13, pages 327-335.
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Articles from other publishers (3)

Małgorzata Skweres-Kuchta, Iwona Czerska & Elżbieta Szaruga. (2023) Literature Review on Health Emigration in Rare Diseases—A Machine Learning Perspective. International Journal of Environmental Research and Public Health 20:3, pages 2483.
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Austin G. Kulasekararaj, Robert A. Brodsky, Jun-ichi Nishimura, Christopher J. Patriquin & Hubert Schrezenmeier. (2022) The importance of terminal complement inhibition in paroxysmal nocturnal hemoglobinuria. Therapeutic Advances in Hematology 13, pages 204062072210910.
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John Devin Peipert, Austin G. Kulasekararaj, Anna Gaya, Saskia M. C. Langemeijer, Susan Yount, F. Ataulfo Gonzalez-Fernandez, Emilio Ojeda Gutierrez, Christa Martens, Amy Sparling, Kimberly A. Webster, David Cella, Ioannis Tomazos, Masayo Ogawa, Caroline I. Piatek, Richard Wells, Flore Sicre de Fontbrune, Alexander Röth, Lindsay Mitchell, Anita Hill & Karen Kaiser. (2020) Patient preferences and quality of life implications of ravulizumab (every 8 weeks) and eculizumab (every 2 weeks) for the treatment of paroxysmal nocturnal hemoglobinuria. PLOS ONE 15:9, pages e0237497.
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