Principal investigator: Dr. Thomas Frazier

Research Institution: John Carroll University

Research Study Title: Development and Validation of a New Neurobehavioral Evaluation Tool for Malan Syndrome

Status: Active

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Who can participate? All individuals, between the ages of 3 and 45, with a genetic diagnosis of Malan syndrome (NFIX gene variant) are encouraged to participate. English must be the primary language spoken at home.

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The information obtained from this study will be presented at the upcoming Malan Syndrome Family Conference and prepared for publication.

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If you are interested in participating or need additional information, please contact the research coordinator for this study, Katie Huba, at khuba@jcu.edu.