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SCN8A Researcher Survey CRN 2026

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Dear colleagues,

The International SCN8A Alliance is hosting a new global SCN8A Collaborative Research Network (CRN) to facilitate collaboration across key stakeholders to accelerate scientific progress and translation to improved treatments and outcomes for all those struggling with SCN8A and related impacts. In preparation for the first in-person gathering of active participants in the CRN this summer, this survey is designed to gather an assessment of progress made towards the SCN8A research priorities in the Research Roadmap from a broad range of researchers and clinicians active in the SCN8A space. The Roadmap was based on similar surveys in 2024, a small workshop in August 2024 that included researchers, clinicians, industry, and family leaders, and was published in 2025. Although the convening itself is invitation-only and will be limited in size, your expertise is essential to ensuring that the discussions reflect the full breadth of knowledge and experience across the SCN8A research community. We are therefore asking members of our broader network of established SCN8A researchers to complete this short but important survey.

Your input will directly shape: The accuracy and completeness of the two‑year progress update The scientific and clinical priorities for the next phase of work The structure and focus of the one‑day convening The evolution of the SCN8A Research Roadmap Your perspective on the key knowledge gaps that are a roadblock on the path to more effective treatments for SCN8A is valued and needed. Please share this survey with other interested colleagues. Thank you for your time. 

The survey should take approximately 10-15 minutes.

Here is a brief overview of progress in the five Roadmap domains to orient your feedback. A full update will be shared with invited participants in advance of the convening.
SECTION 1 - Your Background
Which best describes your role? 
Which best describes your role? 
How many years have you been involved in SCN8A clinical research and/or care?
How many years have you been involved in SCN8A clinical research and/or care?
How familiar are you with SCN8A research overall?
How familiar are you with SCN8A research overall?
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