Moebius Syndrome Foundation Research Registry

The Moebius Syndrome Foundation Research Registry collects disease-specific natural history data about individuals with Moebius syndrome, with the goal of improving the understanding of Moebius syndrome and related facial weakness disorders.

Registry questionnaires were built from common data element standards and cover the following topics:

• Socio-demographics
• Medical history
• Surgical history
• Diagnostic testing
• Effectiveness of treatments
• Disease progression
• Management of care
• Quality of life

We are interested in sharing our data with you! If you would like access to the Moebius Syndrome Foundation Research Registry data for a research project, please contact our registry administrator at registry@moebiussyndrome.org for more information.

Access to Moebius Syndrome Foundation Research Registry data is contingent upon project approval by the Moebius Syndrome Foundation Research Registry Advisory Board.