# International CDKL5 Registry

> **NCT04486768** · — · SUSPENDED · sponsor: **University of Pennsylvania** · enrollment: 500 (estimated)

## Conditions studied

- CDKL5 Deficiency Disorder (CDD)

## Interventions

- **OTHER:** Survey Instrument

## Key facts

- **NCT ID:** NCT04486768
- **Lead sponsor:** University of Pennsylvania
- **Sponsor class:** OTHER
- **Phase:** —
- **Study type:** OBSERVATIONAL
- **Status:** SUSPENDED
- **Start date:** 2018-12-05
- **Primary completion:** 2028-12-31
- **Final completion:** 2028-12-31
- **Target enrollment:** 500 (ESTIMATED)
- **Why stopped:** The Registry is being changed to a new online platform provider. The Registry will resume once the platform transfer has been completed.
- **Last updated:** 2026-04-21

## Collaborators

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## Primary source

ClinicalTrials.gov registry: https://clinicaltrials.gov/study/NCT04486768

## Citation

> US National Library of Medicine, ClinicalTrials.gov registration NCT04486768, "International CDKL5 Registry". Retrieved via AI Analytics 2026-06-24 from https://api.ai-analytics.org/clinical/NCT04486768. Licensed CC0.

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