The vital information from the Consensus on the Diagnosis & Treatment of SCN8A is designed to empower SCN8A families—to bring improved quality of life to those affected by SCN8A—and to enable you to better advocate for your loved one with SCN8A.
WELCOME
The International SCN8A Alliance is pleased to share highlights of the first Consensus on the Diagnosis & Treatment of SCN8A. This effort responds to families and clinicians alike who identified the need for consensus on treatments as one of the highest priorities for improving care for all those with SCN8A. 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.
After nearly two years of collaboration, the group reached a consensus on a wide range of topics including: diagnosis, phenotypes, treatment, clinical features/comorbidities, and counselling and information needs.
This section of our website provides critical information for both clinicians and families from the consensus as well as supplemental insights from the International SCN8A registry and the Danish Epilepsy Center.
While we unfortunately didn’t reach consensus on a number of key areas of 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 lives ones with SCN8A.
With hope and gratitude,
Gabi Conecker, Executive Director of the International SCN8A Alliance and mom to Elliott, who lives with SCN8A
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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IMPORTANT: While this consensus data provides new and valuable insights about best practices in the diagnosis and treatment of SCN8A, this is not treatment advice. We encourage you and your doctor to visit our website for more details.
