The Association Between Fever and CDKL5 Deficiency Disorder: a Nationwide Survey
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 131
- 试验地点
- 2
- 主要终点
- Seizure frequency
研究概览
简要总结
The primary objective of this research is to study the effects of fever on seizure activity in patients with CDKL5 deficiency disorder
详细描述
The survey aimed to gather information on seizure during and after fever and hot temperature bath therapy from families of children diagnosed with CDKL5 deficiency disorder through the WeChat group. It is expected to to develop new intervention strategies to reduce seizure frequency, improve patient quality of life, and ultimately address the therapeutic challenges faced by the global CDKL5 patient community.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Retrospective
入排标准
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •A diagnosis of CDKL5 deficiency, including molecular confirmation of a pathogenic or likely pathogenic CDKL5 variant and refractory seizures.
- •Parents or guardians are willing to complete and provide information about the child's medical history and fever history after receiving the survey questionnaire online.
排除标准
- •Any history of previous brain disease (trauma, etc.) that likely to precipitate seizures.
- •Presence of any clinical condition that in the opinion of the principal investigator makes the patient not suitable to participate in the trial.
结局指标
主要结局
Seizure frequency
时间窗: Fever episodes within one year leading up to 2 hours of questionnaire completion
The results of seizure reduction reported in the questionnaire completed by the parents or the seizure diary provided online
次要结局
未报告次要终点
研究者
Liankun_Ren
Professor
Xuanwu Hospital, Beijing