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Collaboration agreement between SNOMED International and the International League Against Epilepsy

September 14, 2022

SNOMED International and the International League Against Epilepsy (ILAE) have signed a five-year agreement that will contribute to global improvements in care and services for people with epilepsy, a group of disorders characterized by recurrent seizures. 

The ILAE Commission for Big Data and SNOMED International have established an Epilepsy Clinical Project Group. Members of this group will work together to define processes to maintain and update epilepsy content within the international edition of SNOMED CT’s clinical terminology, the world’s most comprehensive healthcare terminology product.

“Establishing accurate, up-to-date clinical terminology for the epilepsies provides a universal language for care, facilitating more efficient and effective healthcare delivery, as well as quality research,” said Prof J. Helen Cross, President of the ILAE in welcoming this collaboration. 

Over 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally. Although about two-thirds of people with epilepsy could be seizure free with medication treatment, gaps in diagnosis and treatment mean that millions of people continue to have seizures, which affect their health, relationships, education, and employment opportunities. 

The SNOMED CT International Edition has included epilepsy content for many years; now, users will benefit from new standards for updating and retiring epilepsy content. These standards will have a significant impact, as SNOMED CT is now published at the end of every month

“So many people’s lives are affected by the impact of epilepsy, whether personally or through family and friends,” said SNOMED International CEO Don Sweete. “Formalizing our long-standing relationship with the ILAE enables us to better support the global community of healthcare providers, researchers, patients and others who treat, study or live with this disease.” 

Visit the ILAE’s Commission for Big Data and SNOMED International’s Epilepsy Clinical Project Group for more information. 

About ILAEEstablished in 1909, ILAE aims to ensure that health professionals, patients and their care providers, governments and the public world-wide have the educational and research resources essential to understanding, diagnosing and treating people with epilepsy. The organization has published a classification of the epilepsies , as well as classifications of seizure types] and epilepsy syndromes . ILAE supports chapters in more than 125 countries.

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