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Evaluating the Patient Reported Outcomes Measurement Information System Scales in Acute Intermittent Porphyria

PURPOSE: Acute Intermittent Porphyria (AIP) is a rare inborn error of heme biosynthesis characterized by life-threatening acute attacks. Few studies have assessed quality of life (QoL) in AIP and those that have had small sample sizes and used tools that may not have captured important domains. METH...

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Wedi'i Gadw mewn:
Manylion Llyfryddiaeth
Cyhoeddwyd yn:Genet Med
Prif Awduron: Naik, Hetanshi, Overbey, Jessica R., Montgomery, Guy H., Winkel, Gary, Balwani, Manisha, Anderson, Karl E., Bissell, D. Montgomery, Bonkovsky, Herbert L., Phillips, John D., Wang, Bruce, McGuire, Brendan, Keel, Siobán, Levy, Cynthia, Erwin, Angelika, Desnick, Robert J.
Fformat: Artigo
Iaith:Inglês
Cyhoeddwyd: 2019
Pynciau:
Mynediad Ar-lein:https://ncbi.nlm.nih.gov/pmc/articles/PMC7060090/
https://ncbi.nlm.nih.gov/pubmed/31690837
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1038/s41436-019-0683-y
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