The Stakeholders Partnering for Arthrogryposis Research: Client-Centered Care and Collaboration (SPARC-­Collaboration)

利益相关者合作进行关节弯曲研究：以客户为中心的护理与协作 (SPARC-协作)

• 批准号: 340503
• 负责人: Dahan-Oliel Nomi
• 金额: $ 1.09万
• 依托单位: Shriners Hospital for Children (Montral)
• 依托单位国家: 加拿大
• 项目类别: Operating Grants
• 财政年份: 2015
• 资助国家: 加拿大
• 起止时间: 2015-11-01 至 2016-11-01
• 项目状态: 已结题
• 来源: https://webapps.cihr-irsc.gc.ca/decisions/p/project_details.html?applId=340503&lang=en
• 关键词: Arthrogryposis Multiplex Congenita; Family-Centered Research; Knowledge Exchange; Lifespan Approach; Multi-Site Collaboration; Patient Engagement

Current research on arthrogryposis is scarce due to the its rarity and the heterogeneity of the population rendering classic research challenging. Individuals with rare diseases are often under-represented as they are not included in typical research and

目前对关节弯曲的研究很少，因为它的罕见性和人口的异质性，使经典研究具有挑战性。患有罕见疾病的个体往往代表性不足，因为他们不包括在典型的研究中，