Krabbe Disease Global Patient Registry

Launched by STATE UNIVERSITY OF NEW YORK AT BUFFALO · Dec 13, 2016

Keywords

ClinConnect Summary

The Krabbe Disease Global Patient Registry is a clinical trial aimed at gathering information about individuals diagnosed with Krabbe disease, a rare genetic condition that affects the nervous system. The study seeks to understand which symptoms appear first, how certain genetic factors and enzyme levels might influence the disease's progression, and which tests can help predict how severe the disease might become. By collecting this information, researchers hope to improve future diagnosis and treatment options for those affected.

Anyone diagnosed with Krabbe disease, those who are at risk for the disease, and family members of affected individuals can participate in this study. If you join, you’ll be asked to provide information about your experience with the disease, which will help researchers better understand it. The study is currently looking for participants of all ages and genders. This is a great opportunity to contribute to important research that could help improve the lives of people living with Krabbe disease.

Gender

ALL

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 someone diagnosed with, or at-risk for, Krabbe disease