This study is creating a database of people with Krabbe disease to better understand how the disease develops and progresses. Researchers want to identify early symptoms, see if enzyme activity levels or specific genetic changes can predict the disease's course, and determine which brain tests can predict when symptoms will start or how severe they will be. This information is crucial because the only treatment for Krabbe disease is bone marrow transplantation, and it's important to identify factors that can accurately predict how the disease will unfold. You can participate if you have Krabbe disease, are at risk for it, or are a family member of someone with or at risk for Krabbe disease. The study aims to enroll 60 participants and will track overall survival for up to 5 years.

Study design

This is an observational study, meaning researchers will collect information without giving any specific treatments. It aims to enroll 60 participants.

What's involved

Not specified in the trial record.

Compensation

Not stated in the trial record.

Follow-up

Participants' overall survival will be measured for up to 5 years.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.