For Researchers
The DRAGONFLY Study collects disease-specific natural history data about individuals with SCN2A-related disorders, with the goal of improving the understanding of SCN2A-related disorders 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
We are interested in sharing our data with you! If you would like access to the DRAGONFLY Study data for a research project, please contact our registry administrator at dragonfly@scn2a.org for more information. Access to the DRAGONFLY Study data is contingent upon project approval by the DRAGONFLY Study Advisory Board.