The Association Between Fever and CDKL5 Deficiency Disorder: a Nationwide Survey

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

131 participants

Study Classification

OBSERVATIONAL

Study Start Date

2024-02-01

Study Completion Date

2024-12-15

Brief Summary

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The primary objective of this research is to study the effects of fever on seizure activity in patients with CDKL5 deficiency disorder

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Detailed Description

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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.

Conditions

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CDKL5 Deficiency Disorder

Study Design

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Observational Model Type

COHORT

Study Time Perspective

RETROSPECTIVE

Interventions

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Observation

This study was an observational study without intervention

Intervention Type OTHER

Eligibility Criteria

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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.

Eligible Sex

ALL

Accepts Healthy Volunteers

No