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NCT03285425 · ClinicalTrials.gov registry record
Natural History of Neuronal Ceroid Lipofuscinosis, Batten's CLN6 Diseae
A clinical trial of Batten Disease and CLN6, sponsored by Emily de los Reyes.
- Active
- Registry status
- 30
- Enrollment target
- 1
- Study location
NCT03285425: Active study of Batten Disease and CLN6, sponsored by Emily de los Reyes.
NCT03285425 is a study of Batten Disease and CLN6 that is active but no longer recruiting, run by Emily de los Reyes. The registered enrollment target is 30 participants, below the 2,827-participant average among 11 other Batten Disease trials with a reported enrollment target (99% lower). The trial reports 1 study location across 1 state. According to ClinicalTrials.gov, the official US trial registry.
The verdict
NCT03285425, a study of Batten Disease and CLN6, is active but no longer recruiting, sponsored by Emily de los Reyes.
- ACTIVE NOT RECRUITING
- Registry status
- 30 participants
- Enrollment target
- 1
- Study location
Study Summary
CLN6 is a rare, neurodegenerative disease that causes progressive loss of acquired skills with motor delay, visual loss, seizures and ataxia. The investigators propose a natural history study of this rare disorder since it is currently unknown. It is important to understand disease progression in CLN6 disease to be able to judge therapeutic efficacy as emerging therapies like gene therapy become available.
Primary Outcome
The investigators will assess historical data for the onset of seizures, blindness, dementia, and loss of motor skills; and will request any available MRIs and EEGs.
Conditions Studied
Interventions
- OTHER Natural history
Study Locations (1)
Ohio
- Nationwide Children's Hospital - Columbus
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 30 participants |
| Start Date | 2017-01 |
| Est. Completion | 2026-12 |
What the registry record for NCT03285425 still lists
NCT03285425 is an observational study that tracks outcomes without assigning an intervention. The registry caps enrollment at 30 participants, a relatively small participant target, below the 2,827-participant average among 11 other Batten Disease trials with a reported enrollment target (99% lower).
The record links to 2 conditions, with Batten Disease appearing as the primary indexed condition, and to 1 intervention - of which Natural history is the first listed.
NCT03285425 reports a single indexed study location in Ohio.
Frequently Asked Questions
What is clinical trial NCT03285425 about?
NCT03285425 is a clinical study titled "Natural History of Neuronal Ceroid Lipofuscinosis, Batten's CLN6 Diseae". CLN6 is a rare, neurodegenerative disease that causes progressive loss of acquired skills with motor delay, visual loss, seizures and ataxia. The investigators propose a natural history study of this rare disorder since it is currently unknown. It is important to understand disease progression in CL...
What is the current status of trial NCT03285425?
This trial is currently active not recruiting. The enrollment target is 30 participants. The study started on 2017-01. Estimated completion is 2026-12.
What conditions does trial NCT03285425 study?
This clinical trial studies the following conditions: Batten Disease, CLN6.
What interventions are being tested in trial NCT03285425?
The interventions under investigation include: Natural history (OTHER).
Who is sponsoring clinical trial NCT03285425?
This trial is sponsored by Emily de los Reyes, which has 4 total clinical trials registered on ClinicalTrials.gov.
Where is trial NCT03285425 being conducted?
This trial has 1 study location across Ohio. Contact the study sites directly through ClinicalTrials.gov for enrollment availability.
Learn More About Clinical Trials
Similar trials for Batten Disease
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Where NCT03285425's enrollment target sits among peer trials
30 9th of 11 higher than 3 of 11 other Batten Disease trials
participants (enrollment target), bucketed by value
Each bar is a band; taller bars hold more other Batten Disease trials. The dashed line + filled bar mark this entry. Hover or tap any bar for its full count and share, and where it sits relative to this entry.
Source ClinicalTrials.gov registry export · 2026-08-08
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Long-Term Follow Up of CLN6 Batten Disease Subjects Following Gene Transfer
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