🏛️ Verified NIH Record • Updated 2026-01-05
Rare Glycogen Storage Diseases Natural History Study (NCT06795152)
🟢 Recruiting Interventional Protocol 📊 Observational Clinical Research Sponsor: Duke University
🩺 Plain-English Summary (8th-Grade Level)
The purpose of this study is to collect and study key medical data about several ultra-rare GSDs (Glycogen Storage Diseases) including, but not limited to, GSD types 0a, 0b, VII, X, XII, XIII, XV, PRKAG2 syndrome and Danon disease.
Who can join: Review the eligibility criteria below.
Location: Duke University — Durham, North Carolina
Age range: 0 Years to 90 Years
🧪 Interventions in This Study
- No intervention (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)
- Duke University — Durham, North Carolina
📞 Contact the Study Coordinator
Phone: (919) 681-8823
Email: rebecca.koch@duke.edu
Coordinator details come directly from the registered NIH protocol. Confirm the study is still recruiting before traveling.
💰 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.
More studies in Glycogen Storage Disease
- A Study of mRNA-3745 in Adult and Pediatric Participants With Glycogen Storage Disease Type 1a (GSD1a) — Farmington, Connecticut
Explore by condition: All Glycogen Storage Disease clinical trials
💡 How to Participate
- Check the checklist above to see if you may qualify.
- Contact the study coordinator using the phone/email above.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.