The vital information from the Consensus on the Diagnosis & Treatment of SCN8A was developed to enable SCN8A families and clinicians—to bring improved quality of life to those affected by SCN8A—and to empower caregivers with evidence to advocate for their loved ones with SCN8A.
Early diagnosis may lead to a better prognosis. Understand what goes into a diagnosis and how it can improve outcomes.
The 5 categories of the SCN8A gene. Treatment must take into account the SCN8A phenotype, function and variant.
Find the latest info on care strategies. Treatments plans require a tailored approach for each person with SCN8A.
Outcomes can be improved through early intervention. Find out the projected outcomes and come up with effective strategies to help mitigate the risks of SCN8A.
A rigorous 2 year effort that resulted in the FIRST-EVER global consensus. 16 countries across 5 continents – led by pioneers in the field of SCN8A care & treatment.
Important information about SCN8A epilepsy disorder: what families should expect from doctors, glossary, and community support, and more to help.
Download and Share Key SCN8A Resources: Download the newly published articles on SCN8A care and treatment for clinicians and share them with your healthcare providers. Additionally, find a family-friendly summary below, tailored for easy understanding.
Please fill in the form below (once for each provider you want to receive a copy) and your healthcare provider(s) will automatically get an email to their inbox with the newly published SCN8A consensus guidelines.
WELCOME
This consensus, which encompasses the latest information on SCN8A-related disorders, is a resource for both SCN8A families and clinicians. This portion of our website, designed around the FIRST-EVER global Consensus on the Diagnosis & Treatment of SCN8A, integrates all the best available science from the consensus as well as supplemental insights from the International SCN8A Registry and the Danish Epilepsy Center Dataset into one place. This vital data is for families and clinicians alike seeking the latest information on diagnosis, care, and treatment of SCN8A-related disorders. Through a rigorous process, supported by global partners, the SCN8A Alliance has successfully integrated insights from top SCN8A experts and families around the world, aiming to improve the care and treatment of SCN8A.
While we couldn’t reach consensus on a number of key emerging areas in SCN8A, including the growing diversity of the community, we are hopeful that this information will level the playing field for those living with SCN8A so that no matter where in the world they live, they get access to the best information to help guide care and treatment of their loved ones with SCN8A. As more families with SCN8A emerge, we will continue to document the growing diversity so that future iterations of the consensus process capture the wide spectrum of the disorder.
Twelve years after the discovery that SCN8A mutations can cause epilepsy, this is the most significant development for our small but growing community. We are grateful to the global SCN8A community – including 30 pediatric epileptologists and 13 families from 16 countries and 5 continents – who helped us over the last two years to bring this massive effort to fruition.
In community,
Gabi Conecker, mom to 11yo Elliott who lives with SCN8A
Executive Director & Co-Founder of the International SCN8A Alliance
The full recording of the webinar launch on the findings from the consensus process can be watched here. You can also find brief videos on topics including diagnosis, phenotypes, treatments, non-seizure clinical features, prognosis and more, linked at the “Keep Exploring” section below.
