The Association Between Fever and CDKL5 Disorder: a Nationwide Survey
- Conditions
- CDKL5 Deficiency Disorder
- Registration Number
- NCT06663163
- Lead Sponsor
- Xuanwu Hospital, Beijing
- Brief Summary
The primary objective of this research is to study the effects of fever on seizure activity in patients with CDKL5 deficiency disorder
- Detailed Description
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.
Recruitment & Eligibility
- Status
- COMPLETED
- Sex
- All
- Target Recruitment
- 102
- 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.
- 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.
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Seizure frequency 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
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (1)
Xuanwu Hospital,Capital Medical University
🇨🇳Beijing, Beijing, China