RareKids-CAN: Pediatric Rare Disease Clinical Trials and Treatment Network

RareKids-CAN：儿科罕见病临床试验和治疗网络

• 批准号: 495575
• 负责人: Lacaze-Masmonteil Thierry
• 金额: $ 1456.99万
• 依托单位: Maternal Infant Child and Youth Research Network (Vancouver, BC)
• 依托单位国家: 加拿大
• 项目类别: Operating Grants
• 财政年份: 2023
• 资助国家: 加拿大
• 起止时间: 2023-10-01 至 2028-10-01
• 项目状态: 未结题
• 来源: https://webapps.cihr-irsc.gc.ca/decisions/p/project_details.html?applId=495575&lang=en
• 关键词: Child Health; Data Science; Drug Development; Paediatric Clinical Research Units; Paediatric Clinical Trials; Patient And Public Involvement; Patient Registries; Precision Medicine; Rare Diseases; Real-World Evidence

Rare diseases (RDs) affect almost 5% of the population. One in 15 children is born with a RD. Patients with these conditions occupy a quarter of pediatric hospital beds. The journey of diagnosis of RDs and access to treatment, when available, can be long

罕见疾病（Rare Diseases，RDs）影响了近5%的人口。每15个孩子中就有一个出生时患有RD。患有这些疾病的患者占据了儿科医院床位的四分之一。RD的诊断和获得治疗的旅程可能很长