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

Capital Medical University

Status: Completed

Conditions: CDKL5 Deficiency Disorder

Treatments: Other: Observation

Study type: Observational

Funder types: Other

Identifiers

NCT06663163

2024-127-002

Details and patient eligibility

About

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

Full 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.

Enrollment: 131 patients

Sex: All

Ages: Under 10 years old

Volunteers: No Healthy Volunteers

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.