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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

International Long QT Syndrome Registry

a/k/a: ILQTSR


Heart Research Follow-up Program
Box 653
Rochester, NY 14642-8653





800 Number




Email Address

The International Long QT Syndrome Registry (ILQTSR) is a research organization that maintains an international database on long QT syndrome. The aim of the registry is to improve understanding of the genetics and natural history of this rare heart disorder. It also seeks to improve treatments for affected individuals. Families with the disorder and physicians who participate in this worldwide registry program aid efforts toward improved treatments. The registry also publishes in the peer-reviewed medical literature.

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