🏛️ Verified NIH Record • Updated 2025-07-28
Natural History of Neuronal Ceroid Lipofuscinosis, Batten's CLN6 Diseae (NCT03285425)
Natural History Study of Batten's CLN6 Disease
🔵 Active, Not Recruiting Interventional Protocol 📊 Observational Clinical Research Sponsor: Emily de los Reyes
🩺 Plain-English Summary (8th-Grade Level)
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.
Who can join: Review the eligibility criteria below.
Location: Nationwide Children's Hospital — Columbus, Ohio
Age range: 2 Years to 25 Years
🧪 Interventions in This Study
- Natural history (OTHER)
📋 "Do I Qualify?" — 1-Minute Self Screener
Instant ChecklistFull eligibility criteria are available on the official NIH protocol. View the criteria ↗
📍 All Participating Trial Locations (1 Sites)
- Nationwide Children's Hospital — Columbus, Ohio
💰 Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA § 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.
Explore by condition: All Batten Disease clinical trials
💡 How to Participate
- Check the checklist above to see if you may qualify.
- Review the official NIH record below to find the coordinating site.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.