2012 Fiscal Year Final Research Report
Problems associated with New Therapy for Patients with Rare intractable disease child and their Families
| Project/Area Number |
22592517
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| Research Category |
Grant-in-Aid for Scientific Research (C)
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| Allocation Type | Single-year Grants |
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| Section | 一般 |
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| Research Field |
Lifelong developmental nursing
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| Research Institution | Japan University of Health Sciences |
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Principal Investigator |
TAZAKI Chieko 日本保健医療大学, 保健医療学部, 准教授 (00389892)
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| Co-Investigator(Kenkyū-buntansha) |
KUBO Kyoko 横浜創英大学, 看護学部, 教授 (10320798)
KISHIDA Yasuko 杏林大学, 保健学部, 教授 (60294237)
TAMURA Takeshi 東京学芸大学, 教育学部, 教授 (10242231)
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| Project Period (FY) |
2010 – 2012
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| Keywords | ムコ多糖症 / 酵素補充療法 / 恩恵と負担 / 意思決定 |
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| Research Abstract |
Mucopolysaccharidosis is one of lysosomal diseases that are congenital and hereditary inborn errors of metabolism , and currently we ’ve found no specific treatment for full recovery from mucopolysaccharidosis . In 2007 , an enzymereplacement therapy with Elaprase , a long-awaited therapeutic agent (genetical recombination) for mucopolysaccharidosis , was introduced to Japan . This study aims to research the benefit and burden the patients and their families are suffering due to the therapy for mucopolysaccharidosis , and to define an approach to consistently support the patients who are under the therapy with anxiety . The writingorganized in the benefit group could be further divided into 3 categories : bodycondition , psychology and sociology , and development , whileas the writing in the burden group could be further divided into 4 categories of therapy approach , nursing care , medical effect , and medical facility and system.
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