An innovative registry-based trials platform to improve clinical care, outcomes, and health policy for children with treatable rare diseases
An innovative registry-based trials platform to improve clinical care, outcomes, and health policy for children with treatable rare diseases
一个基于注册的创新试验平台，旨在改善患有可治疗罕见疾病的儿童的临床护理、结果和健康政策
批准号：
416065
负责人：
Potter Elizabeth K
金额：
$200.63万
依托单位：
依托单位国家：
加拿大
项目类别：
Operating Grants
财政年份：
2019
资助国家：
加拿大
项目状态：
已结题
起止时间：
2019-11-01 至 2023-11-01
中文摘要
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英文摘要
New treatments for children with rare genetic diseases are appearing at a rapid pace. Many of these treatments have been found to improve outcomes in highly selected groups of patients under very specific conditions. In order to know how best to recommend
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会议论文
Catalyzing registry-based randomized comparative effectiveness trials for inherited metabolic diseases in children: establishing a core outcome set and data collection tools
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批准号：359015
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项目类别：Operating Grants
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资助金额：$7.29万
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财政年份：2016
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负责人：Potter Elizabeth K
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依托单位：
Designing interventions to improve delivery of health care for children with inherited metabolic diseases: family and provider perspectives
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批准号：357123
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项目类别：Operating Grants
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资助金额：$53.78万
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财政年份：2016
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负责人：Potter Elizabeth K
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依托单位：
Emerging team in rare diseases: achieving the "triple aim" for inborn errors of metabolism
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批准号：247573
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项目类别：Operating Grants
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资助金额：$108.58万
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财政年份：2011
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负责人：Potter Elizabeth K
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依托单位：
海外基金
