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The Association Between Fever and CDKL5 Disorder: a Nationwide Survey

Completed
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
Inclusion Criteria
  • 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.
Exclusion Criteria
  • 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
NameTimeMethod
Seizure frequencyFever 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
NameTimeMethod

Trial Locations

Locations (1)

Xuanwu Hospital,Capital Medical University

🇨🇳

Beijing, Beijing, China

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