Treatment needs and expectations for Fabry disease in France: development of a new Patient Needs Questionnaire

机译：法国法布里病的治疗需求和期望：制定新的患者需求调查表

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The 3-step PNQ Fabry development and validation process

机译：三步PNQ Fabry开发和验证过程

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期刊名称 Orphanet Journal of Rare Diseases
作者
Esther Noël; Bertrand Dussol; Didier Lacombe; Najya Bedreddine; Alain Fouilhoux; Pierre Ronco; Delphine Genevaz; Soumeya Bekri; Albert Hagège; Frédérique Dupuis-Siméon; Valérie Derrien Ansquer; Dominique P. Germain; Olivier Lidove;
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作者单位

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年(卷),期 2019(14),-1
年度 2019
页码 -1
总页数 10
原文格式 PDF
正文语种
中图分类医学史;
关键词
Fabry disease; Patient association; Patient-reported outcome measure; Patient self-reported tool; Patient Needs Questionnaire; Psychometric analysis; Lysosomal disorders;

机译：法布里病;患者协会;患者报告的结局指标;患者自我报告的工具;患者需求调查表;心理计量学分析;溶酶体疾病;

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专利

1. Fabry patients' needs and expectations regarding their treatment in France: Development of a Patients' Need Questionnaire (PNQ Fabry) [J] . Noel Esther, Dussol Bertrand, Lacombe Didier, Molecular genetics and metabolism . 2019,第2期

机译：法国患者对法国待遇的需求和期望：患者需要调查问卷（PNQ Fabry）
2. Treatment needs and expectations for Fabry disease in France: development of a new Patient Needs Questionnaire [J] . Esther No?l, Bertrand Dussol, Didier Lacombe, Orphanet journal of rare diseases . 2019,第1期

机译：法国法布里病的治疗需求和期望：制定新的患者需求调查表
3. Patients expectations and fulfilment of expectations before and after treatment for suspected coronary artery disease assessed with a newly developed questionnaire in combination with established health-related quality of life questionnaires [J] . Paulin Andréll, Angela B?ng, Henrik Fryklund, Open Heart . 2017,第1期

机译：用新开发的调查表结合已建立的健康相关生活质量调查表评估患者对可疑冠状动脉疾病治疗前后的期望和期望
4. Development and testing of prediction models for end stage kidney disease patient nonadherence to renal replacement treatment regimens utilizing big data and healthcare informatics [C] . Yue Jiao, Geary Dan, Chaudhuri Sheetal, IEEE International Conference on Bioinformatics and Biomedicine . 2015

机译：利用大数据和医疗信息学开发和测试终末期肾病患者不遵守肾脏替代治疗方案的预测模型
5. Questionnaire to measure patients' expectations of orthodontic treatment in two rural private orthodontic practices. [D] . Anderson, William C. 2010

机译：在两种农村私人正畸实践中测量患者对正畸治疗期望的问卷。
6. Original research article: Patients expectations and fulfilment of expectations before and after treatment for suspected coronary artery disease assessed with a newly developed questionnaire in combination with established health-related quality of life questionnaires [O] . Annika Odell, Angela Bång, Paulin Andréll, 2017

机译：原始研究文章：用新开发的调查表结合已建立的健康相关生活质量调查表评估患者对可疑冠状动脉疾病治疗前后的期望值和期望值
7. Treatment needs and expectations for Fabry disease in France: development of a new Patient Needs Questionnaire [O] . Esther Noël, Bertrand Dussol, Didier Lacombe, 2019

机译：法国法布里疾病的治疗需求和期望：新患者的发展需要问卷

Treatment needs and expectations for Fabry disease in France: development of a new Patient Needs Questionnaire

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