The MdDS Patient Registry collects disease-specific natural history data about individuals with MdDS, with the goal of improving the understanding of MdDS 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
- Symptoms and triggers
- Comorbidities
We are interested in sharing our data with you! If you would like access to the MdDS Patient Registry data for a research project, please contact our registry administrator at admin@mddsregistry.org for more information. Access to the MdDS Patient Registry data is contingent upon project approval by the MdDS Patient Registry Advisory Board.