For Researchers

The Metachromatic Leukodystrophy Community United Research and Engagement Survey (MLDCures) collects disease-specific natural history data about individuals with Metachromatic Leukodystrophy (MLD), with the goal of improving the understanding of MLD and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics:

• Socio-demographics
• Medical history and diagnostics
• Treatment and disease progression
• Management of care
• Quality of life
• Clinical trial participation
• CHOP natural history participation

We are interested in sharing our data with you! If you would like access to MLDCures data for a research project, please contact our registry administrator at info@curemld.com for more information. Access to MLDCures data is contingent upon project approval by the MLDCures Advisory Board.