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To what degree are orphan drugs patient-centered? A review of the current state of clinical research in rare diseases

机译：孤儿药物在多大程度上以患者为中心？罕见病临床研究现状综述

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entries from January 1, 2002 to July 1, 2017: Rare diseases overall vs. rare diseases with a PROM evaluation

机译：从2002年1月1日到2017年7月1日的条目：通过PROM评估的总体罕见病与罕见病

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期刊名称 Orphanet Journal of Rare Diseases
作者
Sally Lanar; Catherine Acquadro; James Seaton; Isabelle Savre; Benoit Arnould;
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作者单位

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年(卷),期 2020(15),-1
年度 2020
页码 -1
总页数 18
原文格式 PDF
正文语种
中图分类医学史;
关键词
Patient-centricity; Patient-reported outcomes; Rare diseases; Orphan drugs; Clinical trials; Labeling claims; Patient advocacy groups; Patient engagement;

机译：以患者为中心;患者报告的结果;罕见疾病;孤儿药物;临床试验;标签要求;患者辩护团体;患者参与;
入库时间 2022-08-21 11:44:00

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专利

1. New US Orphan Drugs Director Plans to Step up the PaceThe new director of the US Food and Drug Administration's Office of Orphan Product Development, Tim Cote, talks to Neena Brizmohun about plans to boost the development of treatments for rare diseases. [J] . Anonymous The regulatory affairs journal: Pharma . 2008,第4期

机译：美国新的孤儿药主任计划加快步伐美国食品和药物管理局孤儿产品开发办公室的新主任蒂姆·科特（Tim Cote）与Neena Brizmohun讨论了促进罕见病治疗方法发展的计划。
2. Raising orphans: How clinical development programs of drugs for rare and common diseases are different [J] . OrfaliM., FeldmanL., BhattacharjeeV., Clinical Pharmacology and Therapeutics . 2012,第2期

机译：抚养孤儿：罕见和常见疾病药物的临床开发计划有何不同
3. Orphandev, French Clinical Trials Network dedicated to Orphan drugs and therapeutics development for rare diseases [J] . Yolande Adjibi, Jo?lle Micallef, Olivier Blin Orphanet journal of rare diseases . 2010,第S1期

机译：Orphandev，法国临床试验网络，致力于罕见疾病的孤儿药物和疗法开发
4. RareBox App. Patient-Centered Monitoring System in the Self-management of Rare Diseases [C] . Andrea Fiorucci, Stefania Pinnelli Italian on ambient assisted living forum . 2019

机译：earlbox应用程序。珍视患者的珍稀疾病自我管理监测系统
5. Meta-Analysis to Identify and Evaluate Factors Associated with Regulatory Approval of Orphan Drugs (OD) to Develop an Algorithm for Predicting Regulatory Approval (Success) and to Develop a Standardized Tool to Improve Orphan Drug Portfolio Decision-Making [D] . Florent, Milky C. 2019

机译：荟萃分析，以识别和评估与孤儿药物监管批准（OD）相关的因素，以开发预测监管批准（成功）的算法，并开发标准化工具以改善孤儿药物投资组合决策
6. Is the current approach to reviewing new drugs condemning the victims of rare diseases to death? A call for a national orphan drug review policy [O] . Joe T.R. Clarke 2006

机译：当前审查新药的方法是否定罪罕见疾病的受害者至死？呼吁制定国家孤儿药审查政策
7. Is the current approach to reviewing new drugs condemning the victims of rare diseases to death? A call for a national orphan drug review policy [O] . Clarke, Joe T.R. 2006

机译：当前审查新药的方法是否定罪罕见疾病的受害者至死？呼吁制定国家孤儿药审查政策

To what degree are orphan drugs patient-centered? A review of the current state of clinical research in rare diseases

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