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Consensus for the Diagnosis and Treatment of SCN8A

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.

SCN8A Diagnosis

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. 

Documenting the many conditions associated 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.

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

After nearly two years of collaboration, using a scientific data collection technique called the modified Delphi method, we reached consensus on a wide range of topics including: diagnosis, different SCN8A-related health conditions, treatment, counseling, and information needs. Keep reading to find out more about the process AND the results.

Core Panel

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Workgroups

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Iterative Process (3x)

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Consensus Guidance

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How we Built Consensus

SCN8A families are at the center of all we do when we think about how to find answers for our children. Considering the scarcity of diagnosed SCN8A cases, we sought advice from the leading SCN8A clinicians and researchers to determine the best process by which we could build consensus for treatment. It became clear that a Modified Delphi process would be the best path forward. Through a rigorous process, supported by global partners, the SCN8A Alliance successfully integrated insights from top SCN8A experts across the globe and practical knowledge from families to improve quality of life for those with SCN8A.

 We highlight key areas of consensus along with additional insights from the International SCN8A Registry and Danish Epilepsy Center. This includes details on topics of high interest in an easily downloadable form to facilitate offline learning and communication with healthcare providers.

Click HERE to read more about the incredible team and the processes that were used to find consensus. 

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