Global Data Standards Being Developed for Rare Disease Research

Global Data Standards Being Developed for Rare Disease Research

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Global Data Standards Being Developed for Rare Disease Research

Global data standards for conducting research on rare diseases, such as Lambert-Eaton myasthenic syndrome (LEMS), are being developed by a new partnership between the Clinical Data Interchange Standards Consortium (CDISC) and the National Organization for Rare Disorders (NORD). Rare disorders in the U.S. are defined as those affecting fewer than 200,000 people. An estimated 25 million to 30 million Americans live with a rare disease. On a global scale, around 350 million people are thought to…

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