Global krabbe disease registry aims to decode early warning signs
NCT ID NCT02993796
First seen Jul 17, 2026 · Last updated Jul 17, 2026
Summary
This study builds a global database of people diagnosed with or at risk for Krabbe disease, a rare nerve disorder. Researchers will track symptoms, genetic mutations, and enzyme levels to find clues that predict when the disease starts and how severe it becomes. The registry also includes family members to help understand inherited patterns. No treatments are tested; the goal is to gather knowledge that could guide future care and research.
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
- What this could lead to
- If successful, this registry could help doctors identify early warning signs of Krabbe disease and better predict how the disease will progress in different patients.
- What could go wrong
- This is an observational registry, not a treatment trial, so it will not directly test any therapy. The findings may take years to translate into clinical practice.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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State University of New York at Buffalo
RECRUITINGBuffalo, New York, 14203, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
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