For Researchers

KrabbeCURES collects information on patients and caregivers impacted by Krabbe disease with the goal of improving the understanding of the disease and filling gaps in research needed to #curekrabbe. KrabbeCURES collects disease-specific information with the goal of improving the understanding of Krabbe disease and informing treatment development. Questionnaires cover a variety of topics including but not limited to:

• Demographics
• Treatment and Disease Progression
• Quality of life
• Clinical trial participation

If you would like access to the KrabbeCURES data for a research project, please contact our study administrator at info@krabbeconnect.org. Access to KrabbeCURES data is contingent upon project approval by the KrabbeCURES Scientific Advisory Board.