亨廷顿病症状和功能中的每日变化:可行性和可变性
Noelle E Carlozzi1, Jonathan P Troost2, Jennifer A Miner3
1Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA; Department of Surgery, University of Michigan, Ann Arbor, MI, USA.
Parkinsonism & related disorders
|March 1, 2025
概括
这项研究发现,亨廷顿病 (HD) 的症状和功能在日复一日之间变化比在一天内变化更大. 每天一次的评估可能足以捕捉HD患者的这些现实变化.
科学领域:
- 神经学 神经学
- 临床研究 临床研究
- 患者报告的结果
背景情况:
- 亨廷顿病 (HD) 的每日症状和功能经验未得到充分研究.
- 捕获现实世界的数据对于开发未来的高发性疾病结果测量非常重要.
研究的目的:
- 评估一个为期一周的强化HD研究设计的可行性.
- 了解每日症状和功能变化在预先显现和显现的HD.
主要方法:
- 52名HD参与者完成了实时症状报告,佩戴PRO-Diary设备,并在8天内每天记录日记.
- 数据包括胆固醇,睡眠,疲劳,焦虑,身体活动,言语和社会参与.
- 通过缺失数据率评估可行性;使用多层模型分析变性.
主要成果:
- 缺失数据率在19-52%之间,实时报告的缺失率更高.
- PRO-Daily的磨损符合性为64-78%.
- 与一天内相比,日复一日的症状和功能变化更大.
结论:
- 密集的研究设计是可行的HD研究,与其他人口相比.
- 实时症状报告的数据丢失率最高.
- 日复一日的症状和功能变化表明,每天一次的评估可能足以衡量疾病的结果.
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