GlobalResearch and clinical trials
Global natural history study of 111 patients with CDKL5 deficiency: seizures and sleep problems are very common
A study published in a journal and reviewed by independent scientists. Even so, a single study is not conclusive; it needs to be replicated.
The study called CANDID is following 111 children and young people with CDKL5 deficiency. The patients' average age was 8.3; 93% were girls. In the first 28 days, 82% of patients had more than 16 seizures. Seizures had begun at a median age of 1.5 months. Digestive, muscle tone and sleep problems were the most common additional problems.
What does it mean for patients and families?
This is not a drug study but a natural history study that measures the course of the disease. It helps determine which measures will be useful in future drug trials.
Source
Scientific paper: Baseline characteristics and feasibility of clinical outcome measures in CDKL5 deficiency disorder: The CANDID observational study. Epilepsia, 2026. DOI: 10.1002/epi.70095 · PubMed 41531035
The source page was opened and read on October 7, 2026. Summary prepared by the Doktorclub editorial team and translated from Turkish; it has not yet been reviewed by a physician (a scientific board is being set up).
This page is translated from the Turkish original.
Related disease: CDKL5 deficiency disorder (CDD)
This page reports a development; it is not a treatment recommendation. Your doctor decides whether a treatment is right for you.