Výsledky vyhledávání - "Sean Hegarty"

Akademický článek

Quantifying the impact of symptomatic acute hepatic porphyria on well‐being via patient‐reported outcomes: Results from the Porphyria Worldwide Patient Experience Research (POWER) study

Autor: Amy Dickey, Kristen Wheeden, Desiree Lyon, Sue Burrell, Sean Hegarty, Rocco Falchetto, Edrin R. Williams, Jasmin Barman‐Aksözen, Marc DeCongelio, Alison Bulkley, Joana E. Matos, Tarek Mnif, Jordanna Mora, John J. Ko, Stephen Meninger, Stephen Lombardelli, Danielle Nance

Publikováno v: JIMD Reports, Vol 64, Iss 1, Pp 104-113 (2023)

Abstract Acute hepatic porphyria (AHP) is a group of rare genetic diseases of heme biosynthesis resulting in severe neurovisceral attacks and chronic complications that negatively impact patients' well‐being. This study evaluated the impacts of AHP

Externí odkaz: https://doaj.org/article/887c80c7c03843749b79f3357324015a

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Quantifying the impact of symptomatic acute hepatic porphyria on well‐being via patient‐reported outcomes: Results from the Porphyria Worldwide Patient Experience Research ( POWER ) study

Autor: Amy Dickey, Kristen Wheeden, Desiree Lyon, Sue Burrell, Sean Hegarty, Rocco Falchetto, Edrin R. Williams, Jasmin Barman‐Aksözen, Marc DeCongelio, Alison Bulkley, Joana E. Matos, Tarek Mnif, Jordanna Mora, John J. Ko, Stephen Meninger, Stephen Lombardelli, Danielle Nance

Publikováno v: JIMD Reports. 64:104-113

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::87c2cd7cc83c0a8fa4f7df8ca1dc9d17
https://doi.org/10.1002/jmd2.12343

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Su1363: POWER (PORPHYRIA WORLDWIDE PATIENT EXPERIENCE RESEARCH) STUDY: IMPACT OF ACUTE HEPATIC PORPHYRIA ASSESSED THROUGH AN INTERNATIONAL PATIENT SURVEY

Autor: Danielle Nance, Stephen Meninger, Jordanna Mora, John Ko, May T. Le, Siddharth Jain, Marc DeCongelio, Alison Bulkley, Joana E. Matos, Tarek Mnif, Kristen Wheeden, Desiree Lyon, Sue Burrell, Sean Hegarty, Edrin Williams, Jasmin Barman-Aksözen, Amy Dickey

Publikováno v: Gastroenterology. 162:S-573

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::7c59da113f5685c61c45881a69cab53f
https://doi.org/10.1016/s0016-5085(22)61357-x

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S1253 POWER (Porphyria Worldwide Patient Experience Research) Study: Impact of Acute Hepatic Porphyria Assessed Through an International Patient Survey

Autor: Sue Burrell, May T. Le, Tarek Mnif, Amy Dickey, Lcgc, Danielle Nance, Kristen Wheeden, John J. Ko, Jordanna Mora, Stephen Meninger, Joana E. Matos, Edrin R. Williams, Alison Bulkley, Desiree H. Lyon, Rocco Falchetto, Marc DeCongelio, Jasmin Barman-Aksözen, Siddharth Jain, Sean Hegarty

Publikováno v: American Journal of Gastroenterology. 116:S577-S577

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::d143d65d9fae986c9e91a46d8827a4a9
https://doi.org/10.14309/01.ajg.0000778544.62048.5d

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