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

Xuanwu Hospital, Beijing131 enrolled

Overview

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

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.

Study Type

OBSERVATIONAL

Enrollment

131

Conditions

CDKL5 Deficiency Disorder

Interventions

ObservationOTHER

This study was an observational study without intervention

Eligibility

Sex: ALL

Medical Language ↔ Plain English

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.

Locations (1)

Xuanwu Hospital,Capital Medical University

Beijing, Beijing Municipality, China

Outcomes

Primary Outcomes

Seizure frequency

The results of seizure reduction reported in the questionnaire completed by the parents or the seizure diary provided online

Time frame: Fever episodes within one year leading up to 2 hours of questionnaire completion

Data from ClinicalTrials.gov

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