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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Udgivet i:Genet Med
Main Authors: 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.
Format: Artigo
Sprog:Inglês
Udgivet: 2019
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Article
Online adgang: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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