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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
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.
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Observation | Other | This study was an observational study without intervention |
| Measure | Description | Time Frame |
|---|---|---|
| Seizure frequency | The results of seizure reduction reported in the questionnaire completed by the parents or the seizure diary provided online | Fever episodes within one year leading up to 2 hours of questionnaire completion |
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Inclusion Criteria:
Exclusion Criteria:
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Male or female children with a diagnosis of CDKL5 deficiency, including molecular confirmation of a pathogenic or likely pathogenic CDKL5 variant and refractory seizures.
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| Name | Affiliation | Role |
|---|---|---|
| Liankun Ren, MD | Xuanwu Hospital, Beijing | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Xuanwu Hospital,Capital Medical University | Beijing | Beijing Municipality | 100053 | China |
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| ID | Term |
|---|---|
| C564064 | CDKL5 deficiency disorder |
| D000069279 | Drug Resistant Epilepsy |
| ID | Term |
|---|---|
| D004827 | Epilepsy |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
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| ID | Term |
|---|---|
| D019370 | Observation |
| ID | Term |
|---|---|
| D008722 | Methods |
| D008919 | Investigative Techniques |
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