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NCT04486768 · ClinicalTrials.gov registry record
International CDKL5 Registry
A clinical trial of CDKL5 Deficiency Disorder (CDD), sponsored by University of Pennsylvania.
- Recruiting
- Registry status
- 500
- Enrollment target
- 1
- Study location
NCT04486768 is a study of CDKL5 Deficiency Disorder (CDD) that is actively recruiting participants, run by University of Pennsylvania. The registered enrollment target is 500 participants. The trial reports 1 study location across 1 state.
The verdict
NCT04486768, a study of CDKL5 Deficiency Disorder (CDD), is actively recruiting participants, sponsored by University of Pennsylvania.
- RECRUITING
- Registry status
- 500 participants
- Enrollment target
- 1
- Study location
Study Summary
Owing to the recent classification of CDKL5 Deficiency Disorder (CDD) as a unique disorder, there is a limited understanding of overall disease natural history and meaningful outcome measures. An international patient registry aimed at collecting both patient/caregiver and clinician-entered demographic, patient-reported outcome (PRO) and treatment data would benefit both the scientific and patient communities. This CDD registry will follow up to 500 patients diagnosed with CDD over several years through both the patients/caregivers and their clinicians. Initial data will be collected upon enrollment in the registry, followed by the collection of additional CDD-specific data on a bi-annual/ annual basis. No procedures will be performed as part of this registry. Clinician-entered data will be collected following standard of care visits conducted as part of patients' ongoing clinical care. Ultimately, the goal is to create a contact registry to allow patients/families to be alerted about relevant clinical trials and to collect valuable information that is accessible to the patient and scientific communities, thereby aiding and encouraging research in CDD.
Conditions Studied
Interventions
- OTHER Survey Instrument
Study Locations (1)
Pennsylvania
- University of Pennsylvania Orphan Disease Center - Philadelphia
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 500 participants |
| Start Date | 2018-12-05 |
| Est. Completion | 2028-12-31 |
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Full Details on ClinicalTrials.gov ↗What the Registry Record Tells You About NCT04486768
The ClinicalTrials.gov registry entry for NCT04486768 describes a study currently listed as recruiting, categorized as an unspecified phase. The registered enrollment target is 500 participants, a figure that helps gauge the scale of data the investigators plan to collect. The listed sponsor is University of Pennsylvania, which has 1,423 total studies on file at ClinicalTrials.gov.
The record links to 1 condition, with CDKL5 Deficiency Disorder (CDD) appearing as the primary indexed condition, and to 1 intervention - of which Survey Instrument is the first listed.
NCT04486768 reports 1 study location spanning 1 distinct geographic area - top geographies include Pennsylvania.
Frequently Asked Questions
What is clinical trial NCT04486768 about?
NCT04486768 is a clinical study titled "International CDKL5 Registry". Owing to the recent classification of CDKL5 Deficiency Disorder (CDD) as a unique disorder, there is a limited understanding of overall disease natural history and meaningful outcome measures. An international patient registry aimed at collecting both patient/caregiver and clinician-entered demograp...
What is the current status of trial NCT04486768?
This trial is currently recruiting. The enrollment target is 500 participants. The study started on 2018-12-05. Estimated completion is 2028-12-31.
What conditions does trial NCT04486768 study?
This clinical trial studies the following conditions: CDKL5 Deficiency Disorder (CDD).
What interventions are being tested in trial NCT04486768?
The interventions under investigation include: Survey Instrument (OTHER).
Who is sponsoring clinical trial NCT04486768?
This trial is sponsored by University of Pennsylvania, which has 1,423 total clinical trials registered on ClinicalTrials.gov.
Where is trial NCT04486768 being conducted?
This trial has 1 study location across Pennsylvania. Contact the study sites directly through ClinicalTrials.gov for enrollment availability.
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