The Cute Syndrome Foundation Global SCN8A Survey Series

For Researchers

The Cute Syndrome Foundation Global SCN8A Survey Series collects disease-specific natural history data about individuals with SCN8A disorders, with the goal of improving the understanding of SCN8A 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
• Feeding and Medication Formulation
• Disease Progression

We are interested in sharing our data with you! If you would like access to The Cute Syndrome Foundation SCN8A Global Survey Series data for a research project, please contact our registry administrator at surveysupport@thecutesyndrome.com  for more information. Access to The Cute Syndrome Foundation Global SCN8A Survey Series data is contingent upon project approval by The Cute Syndrome Foundation Global SCN8A Survey Series Advisory Board.