The Global Schaaf-Yang Syndrome Registry

The Global Schaaf-Yang Syndrome (SYS) Registry collects disease-specific natural history data about individuals with SYS, with the goal of improving the understanding of SYS 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 Global SYS Registry data for a research project, please contact our registry administrator at info@sysregistry.org for more information. Access to Global SYS Registry data is contingent upon project approval by the Registry Name Advisory Board.