Aspartylglucosaminuria (AGU) Registry and Natural History Study

The AGU Registry collects disease-specific natural history data about individuals with Aspartylglucosaminuria (AGU), with the goal of improving the understanding of Aspartylglucosaminuria (AGU) 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

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