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Patient Related Outcome Measures Volume 15, 2024 - Issue
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ORIGINAL RESEARCH

Development and Content Validation of Novel Patient-Reported Outcome Measures to Assess Disease Severity and Change in Patients with Erythropoietic Protoporphyria: The EPP Impact Questionnaire (EPIQ)

Susan D Mathias1 Health Outcomes Solutions, Palm Beach Gardens, FL, USAView further author information
,
Laurie Burke2 LORA Group, Normal, IL, USAView further author information
,
Hilary H Colwell1 Health Outcomes Solutions, Palm Beach Gardens, FL, USAView further author information
,
George Mensing3 Disc Medicine, Watertown, MA, USAView further author information
,
Will Savage3 Disc Medicine, Watertown, MA, USAView further author information
&
Hetanshi Naik4 Department of Genetics, Stanford University School of Medicine, Palo Alto, CA, USACorrespondence[email protected]
ORCID Iconhttps://orcid.org/0000-0002-5894-7390View further author information
ORCID Icon
Pages 17-30 | Received 06 Sep 2023, Accepted 30 Jan 2024, Published online: 14 Feb 2024

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