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中文摘要
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个性化医疗的临床应用只有在诊断和治疗方面取得成功, 基于遗传和基因组信息的治疗干预被接受、重视和使用, 患者、受影响的家庭成员和医生。我们的工作是基于经济理论, 前提是,个人对感知的风险,收益和成本的偏好, 干预措施是他们对个性化医疗做出的许多决定的核心, 个性化医疗的利用,以及它对社会的成本和效益。 关于基因检测提供的信息是否以及如何被重视, 患者和医生使用。在整个计划项目中,我们在偏好项目中的目标是 通过使用决策,为理解个性化医疗的个体价值提供基础, 关于林奇综合症的基因检测为了实现我们的目标,我们将使用混合 方法的方法,包括一系列增量定性和定量研究。 我们的目标是:1)了解遗传和基因组的特征 干预和测试对患者对Lynch综合征测试的偏好很重要,2) 在一个大的基于人群的样本中评估对遗传风险信息的偏好。具体目标是: 目标1:Qualitiment通过以下方式检查遗传风险信息和个性化医疗的偏好: 使用焦点小组和访谈。 目标2:使用陈述选择调查定量测量遗传风险信息的偏好 林奇综合征筛查的具体例子。
英文摘要
Clinical adoption of personalized medicine will be successful only to the extent that diagnostic and therapeutic interventions based on genetic and genomic information are accepted, valued, and used by patients, affected family members, and physicians. Our work is based on economic theory where the premise is that individual persons' preferences about the perceived risks, benefits, and costs of such interventions are central to many decisions that they will make about personalized medicine, to the overall utilization of personalized medicine, and to its costs and benefits to society. Little is known about whether and how the information provided by genetic testing will be valued and used by patients and physicians. Within the overall Program Project, our goal in the Preferences Project is to provide a foundation for understanding individual values for personalized medicine by using decisions about genetic testing for Lynch syndrome as an example. To accomplish our goal, we will use a mixed method approach that incorporates a series of incremental qualitative and quantitative studies. Our objectives are 1) to develop an understanding of the characteristics of genetic and genomic interventions and testing that are important to patients' preferences for Lynch syndrome testing and 2) to evaluate preferences for genetic risk information in a large population-based sample. Specific Aims are to: Aim 1: Qualitatively examine preferences for genetic risk information and personalized medicine by using focus groups and interviews. Aim 2: Quantitatively measure preferences for genetic risk information using stated choice survey with the specific example of Lynch syndrome screening.
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