Krabbe Disease Global Patient Registry
Recruiting
Observational Study
Krabbe Disease
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
At a Glance
- Sex
- Any
- Study type
- Observational
- Participants needed
- 60 (estimated)
- Sponsor
- State University of New York at Buffalo · Other
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About This Trial
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/o…
Trial Locations
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Eligibility Criteria
Inclusion Criteria:
* Anyone diagnosed with Krabbe disease
* Anyone at-risk for Krabbe disease
* Family members of someone diagnosed with, or at-risk for, Krabbe disease.
Exclusion Criteria:
* Anyone who is not diagnosed with, or at-risk for, Krabbe disease
* Anyone who is not a family member of …
Contacts