For Researchers

The KCNT1 International Registry collects disease-specific natural history data about individuals with KCNT1-related disorders, with the goal of improving the understanding of KCNT1-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
• Economic impact

We are interested in sharing our data with you! If you would like access to the KCNT1 International Registry data for a research project, please contact our registry administrator at kcnt1_registry@Kcnt1epilepsy.org for more information. Access to KCNT1 International Registry data is contingent upon project approval by the Registry Advisory Board.