OMS Patient Registry

The OMS Patient Registry collects disease-specific natural history data about individuals with OMAS, with the goal of improving the understanding of OMAS 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 OMS Patient Registry data for a research project, please contact our registry administrator, Mike Michaelis, for more information. Access to OMS Patient Registry data is contingent upon project approval by the OMS Patient Registry Advisory Board.