Towards evidence-based care for Rett syndrome: a research model to inform management of rare disorders

针对雷特综合征的循证护理：一种为罕见疾病管理提供信息的研究模型

• 批准号: nhmrc : 1004384
• 负责人: A/Pr Helen Leonard
• 金额: $ 30.54万
• 依托单位: The University of Western Australia
• 依托单位国家: 澳大利亚
• 项目类别: Project Grants
• 财政年份: 2011
• 资助国家: 澳大利亚
• 起止时间: 2011-01-01 至 2014-12-31
• 项目状态: 已结题
• 来源: https://researchdata.edu.au/evidence-based-care-rare-disorders/109026
• 关键词: Towards; evidence; based; care; Rett

Rett syndrome is a rare but serious genetic neurological disorder affecting mainly girls and often complicated by spinal curvature and poor growth. This project will use national register data collected over 16 years to examine change in functional abilities and progression of the scoliosis curve. It will develop guidelines and improve processes to assist with diagnosis and will comprehensively evaluate the surgical treatments used in the management of scoliosis and growth problems.

Rett综合征是一种罕见但严重的遗传性神经系统疾病，主要影响女孩，通常伴有脊柱弯曲和生长不良。该项目将使用16年来收集的国家登记数据来检查功能能力的变化和脊柱侧凸曲线的进展。它将制定指导方针和改进过程，以协助诊断，并将全面评估用于管理脊柱侧凸和生长问题的手术治疗。