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12. Improvements in Hemoglobin and Cognitive Function from Opera: A Real-World Study of Pegcetacoplan Treatment in US Adults with Paroxysmal Nocturnal Hemoglobinuria

Author

Fishman, Jesse, Min, Jinny, Arnett, Lily, and Shenoy, Apeksha

Abstract

Background:Paroxysmal Nocturnal Hemoglobinuria (PNH) is an ultra-rare (0.5-1.5 cases per million), acquired, life-threatening disease characterized by complement-mediated hemolysis and thrombosis (Parker et. al. NORD 2023). PNH-related symptoms are multifactorial and may negatively impact cognitive function, including a difficulty in thinking clearly or “brain fog” (Daly et. al. JPRO 2021). Pegcetacoplan (PEG), a C3 inhibitor therapy, has been assessed in its efficacy for treating PNH and improving hemoglobin (Hb) levels in clinical trials; however, there is limited evidence on the effect of PEG treatment on cognitive function in individuals living with PNH in a real-world setting. Notably, the Patient-Reported Outcomes Measurement System (PROMIS) is a validated system of questionnaires used to reliably assess patient reported outcomes, including cognitive function. The minimal important change (MIC), the smallest change in score that patients perceive as important, is between a 2-6 improvement in T-score for PROMIS measures (Terwee et. al. Qual. Life Res. 2021).

Published
2023
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13. Enchanting Sunset

Author

Min, Jinny

Subjects
Poetry by children, Children's poetry, General interest, Literature/writing
Abstract

Enchanting Sunset A walk by the shore on a blazing summer day, So hot that you can cook an egg on the street. The soft silky sand tickles your toes [...]

Published
2017

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