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Focusing on basic data and a model of healthcare security for rare diseases: The Multidisciplinary Expert Seminar on Healthcare Security for Rare Diseases in China was held in Beijing

机译：关注基础数据和罕见病医疗保障模型：中国罕见病医疗保障多学科专家研讨会在北京举行

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期刊名称 Intractable Rare Diseases Research
作者
Qi Kang; Chunlin Jin; Dingguo Li;
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作者单位

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年(卷),期 2019(8),3
年度 2019
页码 224–225
总页数 2
原文格式 PDF
正文语种
中图分类
关键词
Rare disease healthcare security multidiscipline expert discussion;

机译：罕见病;医疗保健安全;多学科;专家讨论;
入库时间 2022-08-17 12:01:32

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专利

1. Shared communication processes within healthcare teams for rare diseases and their influence on healthcare professionals' innovative behavior and patient satisfaction [J] . Henrike Hannemann-Weber, Maura Kessel, Karolina Budych, Implementation Science . 2011,第S1期

机译：医护团队内部针对罕见疾病的共享交流流程及其对医护人员创新行为和患者满意度的影响
2. The Value of Population Based Data to Study Rare Diseases: An Example Using the Department of Defense Healthcare System [J] . Yood Marianne Ulcickas, Jick Susan, Vasilakis-Scaramozza Catherine, Blood: The Journal of the American Society of Hematology . 2018,第NovaelaTreatmentAppr期

机译：基于人口数据的价值研究稀有疾病：使用国防部医疗保健系统的示例
3. A methodology for a minimum data set for rare diseases to support national centers of excellence for healthcare and research [J] . Choquet Remy, Maaroufi Merienn, de Carrara Albane, Journal of the American Medical Informatics Association : . 2015,第1期

机译：为罕见病提供最小数据集的方法，以支持国家医疗保健和研究卓越中心
4. Evaluating a dictionary of human phenotype terms focusing on rare diseases [C] . Simon Kocbek, Toyofumi Fujiwara, Jin-Dong Kim, International workshop on computational terminology . 2016

机译：评估针对罕见疾病的人类表型术语词典
5. A Comparison of Perceived Barriers to Healthcare between Malaysian and Californian Patients with Rare Disease [D] . Qian, Emily Yuwei. 2016

机译：马来西亚和加利福尼亚罕见病患者的医疗保健感知障碍比较
6. Health service security of patients with 8 certain rare diseases: evidence from China’s national system for health service utilization of patients with healthcare insurance [O] . Rui Min, Xiaoyan Zhang, Pengqian Fang, 2019

机译：患有8种罕见疾病的患者的医疗服务安全性：来自中国国家医疗保险患者医疗服务利用系统的证据
7. We develop a model of scientific creativity and test it in the field of rare diseases. Our model is based on the results of an in-depth case study of the Rett syndrome. Archival analysis, bibliometric techniques and expert surveys are combined with network analysis to identify the most creative scientists. First, alternative measures of generative and combinatorial creativity are compared. Then, we generalize our results and present a stochastic model of socio-semantic network evolution. The model predictions are tested with multiple networks of rare disease specialties. We find that new scientific collaborations among experts in a field enhance combinatorial creativity. Instead, high entry rates of novices are negatively related to generative creativity. By extending the set of useful concepts, creative scientists gain in centrality. At the same time, by increasing their centrality in the scientific community, scientists can replicate and generalize their results, thus contributing to a scientific paradigm. [O] . Massimo Riccaboni, Maria Laura Frigotto 100

机译：我们开发了一种科学创造力模型，并在稀有疾病领域进行测试。我们的模型基于对Rett综合征的深入案例研究的结果。档案分析，文献计量技术和专家调查与网络分析相结合，以确定最具创造力的科学家。首先，比较生成和组合创造力的替代措施。然后，我们推广了我们的结果，并提出了社会语义网络演化的随机模型。模型预测用多个罕见疾病专业网络进行测试。我们发现，一个领域的专家之间的新的科学合作增强了组合创造力。相反，新手的高入门率与生成创造力负相关。通过扩展这组有用的概念，创造性的科学家获得了中心地位。同时，通过增加科学界的中心地位，科学家们可以复制和推广他们的结果，从而促进科学范式的发展。

Focusing on basic data and a model of healthcare security for rare diseases: The Multidisciplinary Expert Seminar on Healthcare Security for Rare Diseases in China was held in Beijing

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