International SCN8A Registry
Patient Data That Drives Results
The SCN8A patient registry is the most comprehensive set of data for SCN8A. We leverage this data to help families in our online support meetings, conduct our own research, and we invite all SCN8A researchers to join us.
For SCN8A Families
The International SCN8A Registry is foremost for SCN8A families. We leverage this incredible source of patient data to deliver improved outcomes for those with SCN8A. The valuable lessons we’ve learned from the registry data help to shape the way SCN8A is treated. To find out more about the information and tools available from SCN8A registry, click below.
For Clinicians & Researchers
We are excited about collaboration. If you are interested in collaborating around SCN8A patient care and /or research for SCN8A-releated disorders, PLEASE let us know. We want to hear from you. Currently we work with over a dozen labs and leading SCN8A clinicians to advance the science of SCN8A.
Learn about the work of the Invitation only SCN8A Research Consortium meeting quarterly to share updates on ongoing work, share assets, and develop new collaborative projects [not sure if we’d open up an application process??]
Learn about the International SCN8A Registry, highlights of what’s been learned and how to collaborate/get access to registry data for planned research projects
Follow the public Facebook group where updates on our programs, research, and new findings from the SCN8A Registry are shared
Learn more about the Alliance’s Global Research Strategy and efforts to accelerate progress toward better treatments and outcomes – and how I might get involved
Be added to the periodic SCN8A Newsletter