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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書誌詳細
出版年:Genet Med
主要な著者: 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.
フォーマット: Artigo
言語:Inglês
出版事項: 2019
主題:
Article
オンライン･アクセス: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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