Krabbe Disease Global Patient Registry (NCT02993796)
The Institute for Myelin and Glia Exploration's Clinical Database of Patients With Krabbe Disease, A World-Wide Registry
🩺 Plain-English Summary (8th-Grade Level)
The purpose of this study is to develop a clinical database of individuals diagnosed with Krabbe disease in order to determine which symptoms herald the onset of clinical disease in the various phenotypes of Krabbe disease; to determine whether level of GALC enzyme activity, or a specific genetic mutation predict the clinical course; and to determine which neurodiagnostic tests predict onset and/or severity of the disease.
Who can join: Review the eligibility criteria below.
Location: State University of New York at Buffalo — Buffalo, New York
📋 "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)
- State University of New York at Buffalo — Buffalo, New York
📞 Contact the Study Coordinator
Phone: (716) 888-4732
Email: tjlangan@buffalo.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 Krabbe Disease
- Gene Transfer Clinical Trial for Infantile and Late Infantile Krabbe Disease Treated Previously With HSCT — Orange, California
- Gene Transfer Clinical Trial for Krabbe Disease — Ann Arbor, Michigan
- Diffusion Tensor Imaging (DTI) in Infants With Krabbe Disease — Pittsburgh, Pennsylvania
Explore by condition: All Krabbe 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.