Krabbe Disease Global Patient Registry

Recruiting now

Conditions studied: Krabbe Disease

In brief

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.

Key facts

Study ID

NCT02993796

Run by

State University of New York at Buffalo

People needed

60

Starts

2014-09-01

Expected to finish

2026-09-01

Last updated by the study team

2026-07-17

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• Anyone diagnosed with Krabbe disease
• Anyone at-risk for Krabbe disease
• Family members of someone diagnosed with, or at-risk for, Krabbe disease.

You may not qualify if…

• Anyone who is not diagnosed with, or at-risk for, Krabbe disease
• Anyone who is not a family member of someone diagnosed with, or at-risk for, Krabbe disease

Where it is running

• State University of New York at Buffalo — Buffalo, New York, United States (enrolling)

Full record on ClinicalTrials.gov

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