Krabbe Disease Global Patient Registry

Description

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.

Conditions

Krabbe Disease

Study Overview

Study Details

Study overview

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.

The Institute for Myelin and Glia Exploration's Clinical Database of Patients With Krabbe Disease, A World-Wide Registry

Krabbe Disease Global Patient Registry

Condition
Krabbe Disease
Intervention / Treatment

-

Contacts and Locations

Buffalo

State University of New York at Buffalo, Buffalo, New York, United States, 14203

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

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

Ages Eligible for Study

to

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

State University of New York at Buffalo,

Thomas J. Langan, MD, PRINCIPAL_INVESTIGATOR, Clinical Director, Clinical Research, Institute for Myelin and Glial Exploration

Study Record Dates

2025-09